Living with Multiple System Atrophy Disease
My name is David from Weimar, Texas. I am 46 years old and have Multiple System Atrophy with Orthostatic Hypotension. I am also hearing impaired with tinnitus and also have GERD Disease. I am married to a very loving wife Valerie, and 5 of the greatest children and a Granddaughter. Make yourself at home and enjoy my website!! Together we can make a difference!!
Changing My Living With Multiple System Atrophy:
Written: 2008
By David S. Dennis
I want to begin by explaining the difficulty most Multiple System Atrophy patients go through is obtaining a true diagnosis. Truly, I can't count on two hands how many MSA patients write to me that it took longer than a year to get a diagnosis. Many doctors have never heard of MSA. And many diagnostic test equipment such as CT, and MRI don't always recognize MSA. Often those tests are used to rule out other diseases. So, for many of us the uphill battle is getting the diagnosis. In my situation it took 7 long months to get a diagnosis. The PET scan really showed the Neurologist who was on hand the details he needed to confirm a probable diagnosis. Now, to take this all in.
For my family the news of the prognosis of MSA meant change. All our plans we made and dreamed about had to be adjusted. With two children out of school it depended on their help to move us out of the country, which I really enjoyed so much. I also gave up driving immediately mainly due to my slow reflexes and slow coordination. I have 2 boys, age 9 and 14 in grade school. So this required us to move within walking distance of their school, while my dear wife works her 5am-4pm shift at the UTEX factory here in Weimar, Texas. We were so lucky to find a house that has plenty of room to maneuver around for when I need a wheelchair or scooter in our home. And the boys school is so close they can walk safely to school while I watch from our big closed in porch.
My wife is my caregiver. The role my caregiver has now is a huge change in our life. I was the main source of income for 20+ years working upper management, and suddenly without much warning the weight was shifted on my wife's shoulders. I suddenly found myself needing so much help and attention. My income was sliced in thirds of what I was making, even with 3 eligible children of supplemental income. My wife found herself working the 60 + hours a week that I worked the last 20 years. At such a high risk of getting hurt, memory problems, and loss of all hearing from temporal atrophy, I was forced out of my job.
We applied for Social Security and were approved in 4 weeks with all the medical information my wife accumulated together in binders. Social Security subtracts the first 6 months from your onset date before they start the 2 year wait to get medicare. I am approaching Medicare here in a couple months finally as my Cobra Insurance is costing us $343/month. So I have had MSA for 2 full years now (6/2009). As of 2010 I believe folks applying for Social Security are automatically approved for disability benifits. So back to my original point my life has taken a huge turn financially due to the diagnosis of Multiple System Atrophy with major income loss and family life goals.
As far as my daily routine change in my life it is important to remember there's no such thing as rush. Unfortunately, I have one speed....slow. With the total loss of hearing there is no alarm clock to wake me up. However, I have a routine despite some loses of abilities. I sleep in a full-size orthopedic bed that reclines to help regulate my blood pressure. I slowly sit up, try to move my feet and legs around, and slowly stand up with the aid of my cane or walker. So long to waking up, jumping out of bed, shave, shower, get dressed, and jump in my vehicle off to work.
First thing I do is take my morning regiment of pills which are always accessible at my bedside. My clothes are easily accessible, however, my thinking is usually slow causing extra trips due to memory problems. Many times I have to pick out clothes the night before just to assure I won't need to make extra trips back and forth from the bathroom to the bedroom. Anyway, I gather my clothes and head for the bathroom. My shower is taken in a seat to prevent hypotension type issues. Adjusting the correct temperature sometimes takes a little extra time with me. Hot water of course can open your pores and trigger hypotension issues. After my shower I move to the sink and shave. With a right hand tremor I must take my time shaving. When finished I head back to the bedroom. On my best days my shower, shave and dressing take an hour.
On school days, my youngest daughter is a Senior at Weimar High School and helps me with getting the boys off to school. Like my wife, my daughter comes home from school at lunch and checks up on me. I am able to fix myself oatmeal for breakfast and take my vitamins also. I must eat soft foods for easy swallowing. Once I am finished with breakfast I usually pick a chore that so far I'm still able to do. Usually, I try to at least sweep the kitchen and dinning room floor and mop. Trust me this takes me a while, but I do a pretty swell job. A lot of times I gather a load of laundry, or assure all dishes are washed. Anything to help my dear wife who now holds the additional title of caregiver. I try to do what I can to help her as I know down the road she will give it all back to me.
I try to take an hour of computer time in the late morning to communicate with my support group friends. (Mainly patientslikeme.) And then head to the bedroom to lay down and rest. Often it is close to 11am. No two days are alike as medications like Mirapex can make me tired quickly on some days. But I try to time it for 11am so I can take my sinemet. I usually watch t.v. and wait for my wife to come home for lunch at noon. At noon again it time to take additional medication for orthostatic hypotension, urinary retention, depression, reflux, memory, etc. Often after my wife leaves its nap time. My daughter comes home from school at 1pm to check up on me also.
The afternoon after my nap and yogurt or something soft I find time to do 15-20 Min's of exercise. After exercise I find time for friends again on my support groups. This is mainly my only communication since my hearing is all silent. I mainly have to stay indoors unless someone is home to watch me outside. Falls seem to happen daily and staying out of public eye seems to work best until I can afford a scooter or wheelchair. After a little computer time I follow up to assure the house is neat, clean, and organized. This way my wife can relax from her long day of work.
The evening is spent with family who want to watch what I'm watching on t.v.. During sport time of the year I'm able to get out of the house and watch my boys play sports. I just try to push myself to be out of my bedroom 24/7, but it really doesn't happen much. Living with Multiple System Atrophy has taken the things I used to do with ease. Getting out to hunt or fish, or hang out with friends doesn't happen so much now. We do not know what MSA will continue to do, but our lives are emotionally torn between the life we had so dreamt we would be living, and what we now have been dealt. My focus is and always will be one day at a time. Have faith and daily prayer for myself, my family, and all my MSA support group patients and families.
SPEAKING AND SWALLOWING:
Another early on symptom I noticed just before my diagnosis was speaking and swallowing problems. Changes in the ability to speak and communicate may often occur in people who have multiple system atrophy disease (MSA). And these changes often result in social isolation and social withdrawal. To myself and many others this is very debilitating MSA symptom. Like in Parkinson disease (PD) it is often a early symptom of our disease. Dysarthria is our medical term used to describe the impairment of speech production and swallowing.
As we understand with MSA many features are affected in relationship to breathing, voice production, richness and clarity of speech. Disruptions to breathing, voice, speech and swallowing are caused by movement of muscles which are slower and weaker. Usually muscles of lips, throat, tongue, voice box, and lungs are affected. Results often are reduced loudness, monotone voice, short rushes of speech, and hoarse voice in my case. Sound at all familiar?
Well many of the same muscles that are used to produce speech are used for eating and swallowing. Excessive saliva production, drooling and hearing impairment are also concerns that greatly have an effect on communication. I am hearing impaired. Poor hearing seriously interferes with communication interaction. Why do I bring hearing up? Well, first I don't realize how soft of loud my voice is coming out. So this type of impairment greatly interferes with communication. And the fact that I'm giving my all to get every word out suddenly become a huge frustration when I often have to repeat myself. So what can we do?
First, let all your doctors understand that they work for you. I don't know how many times my doctor was standing up and heading for the door asking if we had any questions. Ask my wife and she will tell you, "I've sat them right back down." It's ashamed that we all wait forever to gain a diagnosis and then they are running for the door for that next patient. So now that you've gotten their attention ask them who they recommend for a speech-language pathologist (SLP).
A SLP is certified by the American Speech-Language and Hearing Association (ASHA). Improvement in communication skills and swallowing and speech functions are primary roles of SLP health care professionals. Usually your local hospital centers employ SLP's to help provide inpatient and outpatient services. Also try www.asha.org. A speech pathologist can provide detailed information about changes that have occurred in speech, voice and swallowing as our disease progresses, and can provide solutions of treatment to our neurologist. This information can help with our speech, voice, swallowing type problems that we experience.
UPDATE : April 2012
*******I am now approaching my 5th year fighting Multiple System Atrophy (MSA) I have lost ALL swallowing and have a feeding tube in place to feed myself. 2 CAL Jevity 6X a day seems to work best. This regiment took months to get correct as many of us feeding tube patients know we have to record residual amounts until we can get the correct regiment that our digestive system can handle. Besides recording residual it was important to keep track of my weight. 5 years ago I was 6'2" 205lbs., now I am 160lbs and was as low as 145lbs. In my 5 years of swallowing problems I started with taking the modified barium swallow, regular barium swallow, and the best swallowing test in my opinion the Esophagael Manometry Test. There was no longer questions of any of my swallowing problems after the Esophagael Manometry test. For the nearly one hour it takes to take this test there was not one swallow recorded at all. My esophageal muscles have stopped working and the only way I get anything in my stomach is by gravity. I can basically drink water or a sports drink. Today I still have a Speech Therapist in my home 3x a week to help me perform swallowing exercises and maintain a voice that is soft but still understandable. Speech Therapy is probably the most important therapy I have that helps me with my disease. I am lucky to have an awesome therapist who also helps with my memory issues. *******
Trying to understand Multiple System Atrophy
There is no evidence that MSA is an hereditary condition. Yet many specialist in neurology have only recently begun to understand MSA. We pretty much can say that we understand some early symptoms of MSA help us differentiate it between PD (Parkinson's disease). Many people with MSA may have had a diagnosis of Parkinson's disease (PD) initially. I can say mine was (DLB) Dementia with Lewy Bodies, which is similar. MSA and PD cause stiffness and slowness in the early stages. I can say from many sources that dizziness, swallowing difficulty, and urinary difficulties are usually unusual in early Parkinson's disease. The presence of inclusion bodies and loss of certain nerve cells help make MSA a distinct disorder from Parkinson's disease. So let's see what we can learn together about MSA.
Probably the turn key start for my doctors in obtaining a diagnosis was my constant complaints of dizziness. The tilt-table eventually proved all along to my doctors that indeed the dizziness is due to blood pressure falling when standing up or changing position. This drop in blood pressure is called postural hypotension. I mentioned in another forum a few things that help relieve this symptom. These included increasing salt and fluid to help your blood flow. I take florinef as medication to help relieve this symptom. Some folks perform calf exercises, or simply put avoid sudden changes in position.
Many of us don't gain much success from Parkinson's disease medication. (Yet it still can help reduce some symptoms like stiffness.) I know my neurologist had me on sinemet, and than off sinemet because he could tell the difference between the disease and side effects of the sinemet. Quickly he made an analysis that the results from sinemet wasn't helping me much at all, which today the updated criteria of MSA relays on such information as a probable diagnosis. We did learn that adding 4.5g / daily of mirapex with the sinemet helped with some of the stiffness and tremors I was having. (Tremors didn't go away, but did slow down somewhat.) So again my neurologist threw in the fact that every MSA patient is different with responses to regiment of medications given. So now you probably understand where I get the title of this forum. Were all trying to learn and understand Multiple System Atrophy (MSA).
Keep in mind as you read this that the information learned about MSA really takes time to filter down. Many of our specialist are learning about MSA with us. I am so surprised still today on how many Dr's know nothing about our MSA neurological disease. If I didn't run into a 41 year Mayo Clinic specialist who was present for nearly 4 hours of my somotosensory / PET scan testing, I might still be struggling today with no diagnosis or direction to look into. So we have to constantly be telling folks, "MSA is like Parkinson's disease but I have extra additional symptoms like blood pressure problems." (Remember that line because you will have to use it at some point.) Folks seem to understand Parkinson disease much better. I guess names like Ronald Regan and Michael J. Fox help with the recognition.
Now, back with our topic here. Sometimes another problem MSA patients might experience is sleep apnea. This is sometimes associated with snoring, or simply put feeling tired during the day. (Usually associated with low oxygen levels.) But on a serious note sleep apnea is stopped breathing at night when we sleep. Sleep studies may be done to see if any of these symptoms are affecting you. It might be necessary for you to have some breathing assistance at night with a piece of equipment called CPAP (Continuous Positive Airway Pressure). Other breathing problems in MSA are deep sighs, and noisy breathing. I'm here to tell you get yourself tested if you experience these related symptoms.
Yet another problem that may occur at night is having to go to the toilet at night. People with MSA simply produce less urine during the day and more at night. For some of us we may consider a commode or urinal at our bedside. For us patients with orthostatic hypotension or postural hypotension we are usually prone to falls. Some MSA patients may not be able to empty their bladder completely. In this type of situation often self catheterizing may be needed to make us more comfortable. The flip of the coin of this sometimes uncomfortable topic MSA patients experience is constipation. So important to drink our fluids and add fiber to our diets. Even then often we need medications or supplements to help us maintain regular bowl habits.
I want to finish this forum with leaving you this comment my diagnosing neurologist specialist left me. The target for your health care should be the maintenance of you quality of life through close contact with your GP. Treatment of MSA involves a combination of medicine, specialized equipment, and the use of therapists to manage individual symptoms. I can at least understand that it takes a team of specialist to get us through. (GP, Internal Medicine, Urologists, Neurologist, Physical Therapist, Speech Therapist, Occupational Therapist, Psychotherapy, etc, etc..) And realize the reality of this neurological condition often is our specialist learning along with us.
My son's school softball team winning first tournament of 2009. "Life is a team sport."
Thank's so much for all the AWESOME email's on some of my forums. Truth be told, I learn the most from others who suffer along with me. Sometimes the best medicine is "friendship", in that were not alone with this terrible disease. "I take everything one day at a time." It really is what it is. "If you focus on what's there and not what's missing your day will go on much smoother." Currently I'm in my second year with MSA. (From onset of symptoms.) "While I don't know what tomorrow will bring, I'm going to take advantage of today."
I always say, "Living with MSA is all about attitude." I try not to bury my head in the sand. I know that I will face certain challenges with my MSA in the future, but by being creative and willing to make adaptions I continue to try to do the things I have always enjoyed. With this disease I have met some of the greatest folks around via PLM and various support groups, emails, etc. I even have an interest to write a book. (Something I never amagined I had any talent in doing.) Or I may simply choose to utilize blogging like several MSA friends have done. (I have truely met some of the most talented people here at PLM.) It's from them that I become more aware that we need more awareness.
I think all of us should team up and form one goal of awareness in our area we live in. From what many folks have told me, too many certified professionals have little awareness of MSA. "Let's focus on awareness, and with hope the end result will be a clearer big picture." "Hope is optimism with facts to back it up." God bless everyone here at PLM. PLM has provided us with the tools here, lets build this site into the best awareness we can. "Remember life is a team sport."
TREATMENT / RECORDS / ADVICE:
I think that most of us are aware that some of us take some of the same medications. Yet, some of us take totally different medications. Now, what does this mean? My neurologist specialist will tell me that each patient is different. Since currently there is no cure we haven't found that winning medicine regiment. Each of our neurologist are trying to find that winning cocktail mix of medicine that works the best for our well-being. My neurologist used Michael J. Fox who has Parkinson's as an example. (He takes sinemet every 10-15 mins.)
MSA is associated with deterioration and shrinkage of portions of the brain. (Mostly cerebellum, basil ganglia, and brain stem). There is no known cure for our disease. So how do we treat it? So far we only know treatment involves a combination of medicine, specialized equipment, and the use of therapists to manage individual symptoms. Your treatment will usually be managed by a neurologist or physician who specializes in movement disorders. The complex nature of MSA means that the best treatment is gained from a multidisciplinary team approach. A multidisciplinary team is a group of health and social care professionals. Lets all hope for a cure soon.
In the mean time my family and myself try to keep the best records together we can. If you don't have everything together in a binder try to do so. You are entitled to your records from medical doctors and providers. (I even have ER records.) I'm convinced that I was approved for Social Security in 4-5weeks because of a binder of all my medical visits was kept showing detailed criteria of the details, proof, and prognosis information. Keep your records together as it is so handy when you need it for obtaining any kind of help and well-being we can get.
Take advantage of some of the free websites that can create medical cards for your wallets, purses, pockets, etc. I know some of us don't get out and around much, but it's nice to have a little extra communication on us. In the event we need it we can take it out and let others be aware immediately of what meds were on, and the fact that we sometimes struggle to communicate, etc. We are all in this together, and together we will make a difference.
Adjusting to a MSA diet
Most of us with (OH) Orthostatic Hypotension, or those of us with low normal blood pressure cannot tolerate low salt diets. I have read a couple of sources that say we need between 2000 and 3000 milligrams of sodium to maintain our health. (And I find this very true.) While our Doctors are experimenting with that well-being regiment of pills to give us I figured I would do my part and look into the diet part. I hope some of you may find this information helpful, I know I do.
Our studies have found that table salt is an excellent source of sodium, as it has over 2000 (mg) of sodium per teaspoon. Salt tablets are also a good way of obtaining adequate amounts of salt without changing up that taste of your foods. Who would have thought that I'm here this morning writing to you folks about adding salt to your diet. But keeping me in an upright position requires me to have a more salty diet. So here are some ideas about food and the amounts of sodium I have read and seen from a couple of articles. (examples are showing mg/sodium) Again seek advice with your Dr's and throw these ideas at them to assure your best individual results.
CEREALS:
All Bran (1 cup)- 600
Wheaties (1 cup)- 400
Cheerios (1 cup)- 275
DAIRY PRODUCTS:
Parmesan cheese (2oz)- 800
Cottage cheese (1 cup)- 425
FRUITS AND VEGETABLES:
(1) Dill Pickle-1400
Tomato Juice (12oz)- 1200
(1) Sweet Pickle-540
Canned vegetables (1 cup)- 500
MEAT AND POULTRY:
T.V Dinner-1100
Lasagna serving- 1000
Canned Soup (1 cup)- 875
(1) Hamburger-700
(1) Hot Dog-520
(1) Slice Cheese Pizza-500
(1) Slice of lunch meat- 300
(3) Slices of Bacon-250
SNACKS:
(25g) Pretzel Stix- 1300
Salted Nuts (1 cup)-800
******Remember to add 4-8 glasses of fluid a day to all diets. (Water, juices, sport drinks, etc.)
******Try eating smaller meals
Dizziness
Dizziness with a feeling of rotation. Now this is something I can talk about that relates to some of the earlier symptoms I had leading eventually to a Multiple System Atrophy with Orthostatic Hypotension diagnosis. Although dizziness may be considered an umbrella symptom of our disease, many of us have experienced it. In fact 1 in 3 of us are reporting it on our PLM site. (Patients Like Me) I realize every MSA patient is different. Straight forward examination and history usually differentiate.
My ENT doctor explained to me that sometimes as people get older the blood flow to the ears deteriorates and this is thought to underlie many non-specific cases of vertigo. Arthritis of the neck may press on the major arteries going to the brain and give rise to vertigo in certain positions of our neck. Many of us have blood pressure which falls when we stand up giving rise to feelings of light headedness and vertigo. (Many of us MSA patients I might add again.) Often people who feel depressed or who are anxious complain of dizziness. There is a feeling of the room spinning when the head is turned or perhaps on lying down or standing up. Often there is accompanying nausea and an inability to focus properly.
It is amazing how many tests were given to me before someone finally got smart and put me on a tilt-table to check for orthostatic hypotension. Lets see I clearly failed my (ENG) test indicating dizziness and balance problems. I took the (VEP) visual test 2 times and had results of "visual disturbances of double and blurred vision. But that tilt-table proved more than enough of my share of problems stemmed around blood pressure related problems. Later on the (PET) Positron Emmission Tomography showed Dr's a very detailed solution for my total loss of hearing with atrophy (shrinkage) of my temporal lobes. At first my hearing loss lead my ENT (ear, nose, throat) doctor to believe I had Meniere's disease which causes vertigo together with deafness and tinnitus. But clearly now we understand my dizziness/vertigo problems are mainly from falls in blood pressure mostly on standing. So I try to take pre-cautions when standing up as much as possible.
Wanted to share this, and get it out to you folks to check out. Tilt-table testing by your Neurologist Specialist could be your ticket to start solving some of your dizziness/vertigo related problems.
SEE HOW YOU DO ON THIS ONE:
1. List a few teachers who aided your journey through school.
2. Name three friends who have helped you through a difficult time.
3. Name five people who have taught you something worthwhile.
4. Think of a few people who have made you feel appreciated and special.
5. Think of five people you enjoy spending time with.
***********************************************************
The lesson: The people who make a difference in your life are not the ones with
the most credentials, the most money, or the most awards. They are the ones
that care.
***********************************************************
A little Humor!!!
PAIN SCALE:
Use it to communicate to health professionals
10 KILL ME NOW, I cannot bear to live one more nanosecond
9 I am here to keep me from killing myself with the pills I have at home, the pain is that bad
8 Please just let me loose consciousness
7 It hurts so much I can no longer think clearly, or act in a dignified manner
6 It is constant and nothing I have at hand gives me relief
5 It comes and goes and nothing I have at hand gives me relief
4 The pain does not go away and it is scaring me, I am afraid to sleep because I might not wake up
3 I could use something to make it more bearable, I am here because I do not know what this is
2 I could use something to make it more bearable, I am because I do know
1 It's bearable but enough to make me come to the hospital just in case
My Nascar hero...Mark Martin #55
Pictures of my Nascar Racing Hero!!! Don't let this 53 year old fool you!!! He still has it!!!
It's no bragging if you can do it!!!
My caregiver Carlos
My caregiver Carlos. I am so thankful to have Carlos a part of my life. Carlos is a neuroscience college student and my caregiver.
Anxiety:
ANXIETY:
What is "anxiety"? There is constant pre-occupation of a "what if" nature, with thoughts going round and round in circles, returning constantly to whatever has revoked the anxiety. Sound at all familiar? Myself, as a sufferer find sleep is disturbed, sometimes I become irritable and unable to concentrate on other activities. I have always been known as a true people person, but with MSA my family will tell you exactly when I'm out of my Cymbalta medication. (I use Cymbalta for nerve pain and depression/anxiety.) Perhaps one of the few drugs people around me notice that works. To me I have experienced 2 types of anxiety in the last 3 years or so.
(1) Mild anxiety: Even a few years leading up to my diagnosis I sometimes had to respond to support from others, being allowed to talk through the reasons for the anxiety and trying to think of positive ways to overcome the cause. At that time I had the everyday stresses of job, career, family, etc. Sometimes more described as an emotional lability roller coaster ride. I often found helpful strategies in taking regular exercise, scheduling activities to allow myself protected time when I could get things into perspective and turning to hobbies which are relaxing in themselves.
(2) More severe anxiety: Came around the time just before my onset of diagnosis of MSA. This lead to seeking treatment of Cymbalta. I sure found it appropriate to have medication for anxiety since we felt it was beginning to dominate my life. I found myself that patient who wanted to isolate myself from family and friends. Simple tranquillizers are extremely helpful and have the advantage of being taken just when needed rather than as a regular course of treatment. Some of these medications however can become addictive. So Cymbalta was an option my neurologist jumped all over on. (Always seek your doctors advice when dealing with anxiety symptoms.)
So what exactly is anxiety? Most definitions describe anxiety as a psychological and physiological state which is characterized by cognitive, somatic, emotional, and behavioral components. In my terms of understanding I call anxiety an unpleasant feeling of fear and worry. From there I break down the fear and the worry. Usually, but now always, fear is related to specific behaviors of avoidance or escape, whereas anxiety is the result of threats that are taken to be uncontrollable or sometimes unavoidable.
So in easiest terms to understand anxiety is a normal reaction to stress. Best advice is always talking to your Dr's. Try not to let yourself suffer more than we already are with our current MSA diagnosis.
Depression:
I'm here to tell you this is a symptom of Multiple System Atrophy for many of us. It's only natural that we would have this symptom. Keep in mind some of the following. To me the definition of depression is taking the edge off the enjoyment of life with feelings of sadness and an inability to enjoy things fully. We all have our own patterns which some of it we can control, and simply put some "we can't". Everyone is different in respect that some of us cry easily and find that our sleep is disturbed. Some of us get to sleep easily but to wake early in the morning and spend the rest of the time worrying. For some of us depression may be accompanied by feelings of worthlessness and, as it gets more severe, a constant preoccupation with dying, ill health and other morbid thoughts.
Many times there is vague physical symptoms accompanying depression symptoms accompanying depression of which the common tiredness, an inability to breathe deep enough and odd aches and pains. In severe depression peoples' whole blody metabolism slows down and they become constipated, slow thinking, etc. Whatever the reason for the depression, counseling or comforting of this sort can be very useful. From what I understand the actual theories underlying counseling and psychoscocial support are many and varied with psycho analysis being the best known, but there are many other schools of thought. Generally, counseling is helpful where the causes of the depression are predominantly in reaction to life events and where the individual may be close to those life events to make meaningful progress in dealing with them and in moving on in life.
My point is not to be ashamed in getting the help that's going to help benefit your well-being. Depression can do strange things to us. My advice is to not ever be ashamed to talk to a professional. Before I started my Cymbalta treatment I used to isolate myself away from everything I loved. (Family, friends, work, etc.) Just try to be as strong and possitive as ever before.
Sciatica:
The reason I bring up this topic is some of us do experience these types of pains associated with Multiple System Atrophy according to my Neurologist. (It was the very first symptom I developed before my diagnosis months later). Pain in the leg resulting from pressure on a nerve. The sciatic nerve travels down the back of the leg and into the foot. At a number of points it is possible for structures to put pressure on the nerve, giving rise to the pain. Sometime slippage of one of the discs in-between our vertebrae can trigger off the problem as well. These are made up of a soft, jelly like core surrounded in a tough fibrous coating; either the whole disc can slip or, more commonly, part of the fibrous coating ruptures and allows some jelly-like material to ooze out and press on a nerve.
Now, this can happen following a minor movement or sometimes after a clear recognisable event that puts strain on the back. Usually there is acute pain in the lower back with radiation of the pain along the back of the leg, down to the calf or down to the foot. I explained this to another patient on this site, and he talked me into posting this topic. This pattern of radiation of pain helps decide which nerve is being irritated as does the pattern of muscle weakness or loss of there flexes at the knee or at the ankle. Very occasionally there is more severe nerve damage affecting the nerves that control the bladder or the bowel in which case will be unable to pass urine properly. (This was the first symptom I developed before my diagnosis.)
Anyway, we suffer enough with our disease, develop a good relationship with your GP, Neurologist, Urologist, etc. Let them know about these types of pains immediately as some symptoms mentioned are truely an emergency. God Bless Everyone!!!
(PAF) Pure Autonomic Failure
Interesting that many MSA patients may first start with symptoms that suggest PAF. PAF is a degenerative disorder of the autonomic nervous system presenting in middle to late life, affecting men more often than women. The initial feature in men is impotence, but the symptom that usually brings patients to the physician is orthostatic hypotension.
As we already know orthostatic hypotension is best described as unsteadiness, dizziness, or faintness upon standing. Usually worse in the morning, after meals or exercise, or in hot weather. As I read up on PAF we can learn that patients tolerate high altitude very poorly, perhaps because some patients hyperventilate in this situation. Vanderbilt website states that it is noteworthy that patients with PAF do not usually have fevers as high as healthy subjects; nevertheless, any fever will significantly lower their blood pressure and consequently decrease their functional capacity. A sudden decline in functional mobility in a patient with PAF is suggestive of an inter-current infection, usually of the urinary tract.
Vanderbilt website explains on that autonomic failure should be distinguished from two other disorders classified as primary autonomic failure: (1) Multiple System Atrophy (MSA) and (2) idiopathic Parkinson Disease (PD). PAF is less progressive and generally induces less disabling symptoms than do these other syndromes. As I read on it also explains that there should be no indication from the history or physical examination of cerebellar, striatal, pyramidal and extra pyramidal dysfunctions we have with our MSA.
The outlook of PAF have generally good outlook compaired to our MSA. Many live for 20 years or more after the onset of their disease. Treatments are similar to orthostatic hypotension with drinking plentiful amounts of water sometimes the biggest help. (great example is 16 ounces of water can raise blood pressure as much as 40 mm Hg, with peak at 30 mins. after ingestion.) Leg-crossing, compression stockings mentioned as well.
Newest Multiple System Atrophy diagnosis criteria:
Subject: MSA Diagnostic Criteria Updated:
Date: 9/22/2008
The criteria for diagnosis of multiple system atrophy have been updated following the second consensus conference on the topic. Criteria are offered for definite, probable, and possible MSA, and for distinguishing MSA with predominant parkinsonism (MSA-P) from MSA with predominant cerebellar ataxia (MSA-C). According to the criteria:
Definite MSA :
Requires neuropathologic finding of widespread and abundant central nervous system glial cytoplasmic inclusions that are positive for alpha-synuclein, in association with neurodegeneration in striatonigral or olivopontocerebellar structures.
Probable MSA :
A sporadic, progressive adult-onset (after age 30) disease characterized by:
--Autonomic failure involving urinary incontinence plus erectile dysfunction in males, or an orthostatic decrease of blood pressure within 3 minutes of standing by at least 30 mm Hg systolic or 15 mm Hg diastolic, and
--Poorly levodopa-responsive parkinsonism (bradykinesia with rigidity, tremor, or postural instability) or
--A cerebellar syndrome (gait ataxia with cerebellar dysarthria, limb ataxia, or cerebellar oculomotor dysfunction
Possible MSA :
A sporadic, progressive adult-onset (after age 30) disease characterized by:
--Parkinsonism or
--A cerebellar syndrome, and
--At least one feature suggesting autonomic dysfunction (otherwise unexplained urinary urgency, frequency, or incomplete bladder emptying, erectile dysfunction in males, or significant orthostatic hypotension decline that does not meet the level requires in probable MSA, and
--at least 1 additional feature from the Table.
Table
Possible MSA-P or MSA-C
Babinski sign with hyperreflexia
Stridor
Possible MSA-P
Rapidly progressive parkinsonism
Poor response to levodopa
Postural instability within 3 years of motor onset
Gait ataxia with cerebellar dysarthria, limb ataxia, or cerebellar oculomotor dysfunction
Dysphagia within 5 years of motor onset
Atrophy on MRI of putamen, middle cerebellar peduncle, pons, or cerebellum
Hypometabolism on FDG-PET in putamen, brainstem, or cerebellum
Possible MSA-C
Parkinsonism
Atrophy on MRI of putamen, middle
BACKGROUND: A consensus conference on multiple system atrophy (MSA) in 1998 established criteria for diagnosis that have been accepted widely. Since then, clinical, laboratory, neuropathologic, and imaging studies have advanced the field, requiring a fresh evaluation of diagnostic criteria. We held a second consensus conference in 2007 and present the results here. METHODS: Experts in the clinical, neuropathologic, and imaging aspects of MSA were invited to participate in a 2-day consensus conference. Participants were divided into five groups, consisting of specialists in the parkinsonian, cerebellar, autonomic, neuropathologic, and imaging aspects of the disorder. Each group independently wrote diagnostic criteria for its area of expertise in advance of the meeting. These criteria were discussed and reconciled during the meeting using consensus methodology. RESULTS: The new criteria retain the diagnostic categories of MSA with predominant parkinsonism and MSA with predominant cerebellar ataxia to designate the predominant motor features and also retain the designations of definite, probable, and possible MSA. Definite MSA requires neuropathologic demonstration of CNS alpha-synuclein-positive glial cytoplasmic inclusions with neurodegenerative changes in striatonigral or olivopontocerebellar structures. Probable MSA requires a sporadic, progressive adult-onset disorder including rigorously defined autonomic failure and poorly levodopa-responsive parkinsonism or cerebellar ataxia. Possible MSA requires a sporadic, progressive adult-onset disease including parkinsonism or cerebellar ataxia and at least one feature suggesting autonomic dysfunction plus one other feature that may be a clinical or a neuroimaging abnormality. CONCLUSIONS: These new criteria have simplified the previous criteria, have incorporated current knowledge, and are expected to enhance future assessments of the disease.
*******************************************************************
"Table 1 Criteria for the diagnosis of probable MSA
A sporadic, progressive, adult (>30 y).onset disease characterized by
* Autonomic failure involving urinary incontinence (inability to
control the release of urine from the bladder, with erectile
dysfunction in males) or an orthostatic decrease of blood pressure
within 3 min of standing by at least 30 mm Hg systolic or 15
mm Hg diastolic and
* Poorly levodopa-responsive parkinsonism (bradykinesia with
rigidity, tremor, or postural instability) or
* A cerebellar syndrome (gait ataxia with cerebellar dysarthria, limb
ataxia, or cerebellar oculomotor dysfunction)"
*******************************************************************
"Table 2 Criteria for possible MSA
A sporadic, progressive, adult (>30 y).onset disease characterized by
* Parkinsonism (bradykinesia with rigidity, tremor, or postural
instability) or
* A cerebellar syndrome (gait ataxia with cerebellar dysarthria, limb
ataxia, or cerebellar oculomotor dysfunction) and
* At least one feature suggesting autonomic dysfunction (otherwise
unexplained urinary urgency, frequency or incomplete bladder
emptying, erectile dysfunction in males, or significant orthostatic
blood pressure decline that does not meet the level required in
probable MSA) and
* At least one of the additional features shown in table 3"
****************************************************************
"Table 3 Additional features of possible MSA
Possible MSA-P or MSA-C
* Babinski sign with hyperreflexia
* Stridor
Possible MSA-P
* Rapidly progressive parkinsonism
* Poor response to levodopa
* Postural instability within 3 y of motor onset
* Gait ataxia, cerebellar dysarthria, limb ataxia, or cerebellar
oculomotor dysfunction
* Dysphagia within 5 y of motor onset
* Atrophy on MRI of putamen, middle cerebellar peduncle, pons, or
cerebellum
* Hypometabolism on FDG-PET in putamen, brainstem, or cerebellum
Possible MSA-C
* Parkinsonism (bradykinesia and rigidity)
* Atrophy on MRI of putamen, middle cerebellar peduncle, or pons
* Hypometabolism on FDG-PET in putamen
* Presynaptic nigrostriatal dopaminergic denervation on SPECT or PET
MSA = multiple system atrophy; MSA-P = MSA with predominant
parkinsonism;
MSA-C = MSA with predominant cerebellar ataxia; FDG = [18F]
fluorodeoxyglucose."
*******************************************************************
Table 4 Features supporting (red flags) and not supporting a
diagnosis of MSA
Supporting features
* Orofacial dystonia
* Disproportionate antecollis
* Camptocormia (severe anterior flexion of the spine) and/or Pisa
syndrome (severe lateral flexion of the spine)
* Contractures of hands or feet
* Inspiratory sighs
* Severe dysphonia
* Severe dysarthria
* New or increased snoring
* Cold hands and feet
* Pathologic laughter or crying
* Jerky, myoclonic postural/action tremor
Nonsupporting features
* Classic pill-rolling rest tremor
* Clinically significant neuropathy
* Hallucinations not induced by drugs
* Onset after age 75 y
* Family history of ataxia or parkinsonism
* Dementia (on DSM-IV)
* White matter lesions suggesting multiple sclerosis
MSA = multiple system atrophy; DSM-IV = Diagnostic and Statistical
Manual of Mental
Disorders, Fourth Edition."
What are the differences between this revised criteria ('08, second
consensus) and the previous criteria ('98, first consensus)? I don't
know if anyone remembers but the '98 criteria had fairly elaborate
tables of things called "features" and "criteria." Fortunately
that's been left behind in the revised criteria.
For probable MSA, the criteria are simplified. This
diagnosis "requires a reduction of systolic blood pressure by at
least 30 mm Hg or of diastolic blood pressure by at least 15 mm Hg
after 3 minutes of standing from a previous 3-minute interval in the
recumbent position. ... (T)his is a more pronounced decrease of blood
pressure than recommended previously in the American Autonomic
Society (AAS)-AAN consensus statement on the definition of
orthostatic hypotension. ... This is to ensure a high level of
accuracy in the diagnosis of MSA, because the disease is a grave one
and carries the prognosis of a markedly shortened life span."
For possible MSA, the criteria are simplified and "has been changed
to require at least one feature suggesting autonomic dysfunction in
addition to parkinsonism or a cerebellar syndrome. ... This change,
particularly the requirement of a feature suggesting autonomic
dysfunction, hopefully will decrease the false positives that
characterize clinical diagnosis in the early stages of the
disorder." For possible MSA, "it is possible now to use both
clinical and imaging results to buttress the diagnosis in subjects
with parkinsonian features or cerebellar dysfunction plus autonomic
symptoms that do not meet the level needed for the diagnosis of
probable MSA."
Diet and Depression:
DIET AND DEPRESSION:
1. Eat regularly throughout the day
“Missing meals, especially breakfast, leads low blood sugar and this causes low mood, irritability and fatigue.”
2. Choose less refined high sugar foods and drinks and more wholegrain cereals,
pulses, fruit and vegetables
“Sugary foods are absorbed quickly into the bloodstream (they may also be referred to as high glycaemic index foods. This may cause an initial ‘high’ or surge of energy that soon wears off as the body increases insulin production, leaving you feeling tired and low.”
3. Include protein at each meal
“the amino acid tryptophan, is important in its effect on the brain, where it influences mood.”
4. Eat a wide variety of foods
“The more varied your diet, the more likely you are to obtain all the nutrients you… Make sure you include 2 portions of different fruits and/or vegetables and a protein food at each meal. Include some red meat or fish as they a good sources of B12 another nutrient that seems associated with the control of mood.”
5. Include oily fish (omega 3 fatty acids) in your diet
“Supplements of omega 3 oils may reduce symptoms inpatients with depression on antidepressant medications.”
6. Maintain a healthy weight
“Both excessive weight loss or weight gain can make your mood worse and should be avoided. Weight loss and lack of good nutrition will deprive the brain of glucose and other nutrients that control mood.”
“Putting on weight unintentionally or feeling out of control of your eating can increase your depression and can lead to yo-yo dieting which leaves you further out of control.”
7. Maintain adequate fluid intake
“The early effects of even mild dehydration can affect our feelings and performance, often characterised by restless or irritable behaviour… loss of concentration and reduced effi ciency in mental tasks.”
8. If you drink alcohol keep within recommended limits
“Alcohol has a depressant effect on the brain so can result in a rapid worsening of your mood. It is also a toxin that has to be deactivated by the liver. During this detoxifi cation process the body uses thiamin, zinc and other nutrients and this can deplete your reserves, especially if your diet is poor.”
9. Exercise regularly
“Exercise leads to the release of endorphins - feel good chemicals that help us to relax and to feel happy. Exercise is particularly important for those withdepression as it also gives structure and purpose to the day. Outdoor exercise that exposes us to sunlight is especially valuable as it affects the pineal gland, directly
boosting mood”
GODS ORDER:
*God's Accuracy*God's accuracy may be observed in the hatching of eggs. For example:
-the eggs of the potato bug hatch in 7 days;
-those of the canary in 14 days;
-those of the barnyard hen in 21 days;
-The eggs of ducks and geese hatch in 28 days;
-those of the mallard in 35 days;
-The eggs of the parrot and the ostrich hatch in 42 days.
(Notice, they are all divisible by seven, the number of days in a week!)
The lives of each of you may be ordered by the Lord in a beautiful way for His glory, if you will only entrust Him with your life. If you try to regulate your own life, it will only be a mess and a failure. Only the One Who made the brain and the heart can successfully guide them to a profitable end.
God's wisdom is seen in the making of an elephant.. The four legs of this great beast all bend forward in the same direction. No other quadruped is so made. God planned that this animal would have a huge body, too large to live on two legs. For this reason He gave it four fulcrums so that it can rise from the ground easily.
The horse rises from the ground on its two front legs first. A cow rises from the ground with its two hind legs first. How wise the Lord is in all His works of creation!
God's wisdom is revealed in His arrangement of sections and segments, as well as in the number of grains.
-Each watermelon has an even number of strips on the rind.
-Each orange has an even number of segments.
-Each ear of corn has an even number of rows.
-Each stalk of wheat has an even number of grains.
-Every bunch of bananas has on its lowest row an even number of bananas, and each row decreases by one, so that one row has an even number and the next row an odd number.
-The waves of the sea roll in on shore twenty-six to the minute in all kinds of weather.
All grains are found in even numbers on the stalks, and the Lord specified thirty fold, sixty fold, and a hundredfold - all even numbers.
God has caused the flowers to blossom at certain specified times during the day, so that Linnaeus, the great botanist, once said that if he had a conservatory containing the right kind of soil, moisture and temperature, he could tell the time of day or night by the flowers that were open and those that were closed!
Thus the Lord in His wonderful grace can arrange the life that is entrusted to His care in such a way that it will carry out His purposes and plans, and will be fragrant with His presence.
Only the God-planned safe life is successful. Only the life given over to the care of the Lord is fulfilled.
MULTIPLE SYSTEM ATROPHY INFORMATION:
Multiple system atrophy is a progressive, fatal disorder that makes muscles stiff (rigid) and causes problems with movement, loss of coordination, and malfunction of internal body processes (such as blood pressure and bladder control). The parts of the brain that control movements and many internal body processes degenerate. Some symptoms resemble those of Parkinson's disease, but internal body processes also malfunction. Doctors base the diagnosis on symptoms. Simple measures and drugs can help lessen symptoms, but the disorder is progressive and ultimately fatal.
Multiple system atrophy usually begins when people are in their 50s. It affects about twice as many men as women. It results from degeneration of several parts of the brain and spinal cord: The basal ganglia (collections of nerve cells at the base of the cerebrum, deep within the brain), which help control voluntary muscle movements by balancing the actions of muscle groups that move the same muscles in opposite ways (for example, a group that bends an arm and a group that straightens the arm) The cerebellum, which coordinates voluntary movements (particularly complex movements done simultaneously) and helps maintain balance Areas that control the autonomic nervous system, which regulates involuntary body processes, such as how blood pressure changes in response to changes in posture (see Low Blood Pressure: Orthostatic Hypotension.) Nerve cells that stimulate muscle action (motor neurons) in the cerebellum, basal ganglia, and spinal cord
The cause of the degeneration is unknown.
Multiple system atrophy includes three disorders previously thought to be separate disorders: Olivopontocerebellar atrophy, which is characterized by symptoms similar to those of Parkinson's disease (called parkinsonism) and difficulty maintaining balance Striatonigral degeneration, which is very similar to Parkinson's disease except that
Symptoms
Multiple system atrophy is a progressive disorder. Early symptoms vary, depending on which part and how much of the brain is affected first. The disorder causes three groups of symptoms.
Parkinsonism—symptoms that resemble those of Parkinson's disease—may occur early. These symptoms result from degeneration in the basal ganglia. Muscles are stiff (rigid), and movements become slow, shaky, and difficult to initiate. When walking, people may shuffle and not swing their arms. People feel unsteady and off balance, making them more likely to fall. Posture may be stooped. Limbs may tremble jerkily, usually when they are held in one position. But people with multiple system atrophy are less likely to have tremors during rest than people with Parkinson's disease. Articulating words is difficult, and the voice may become high-pitched and quaver.
Loss of coordination may also occur early. It results from degeneration in the cerebellum. People may be unable to control movements of their arms and legs. Consequently, they have difficulty walking and take wide, irregular steps. When reaching for an item, they may reach beyond it. When sitting, they may feel unstable. People may have difficulty focusing their eyes on and following objects. Tasks that require rapidly alternating movements, such as turning a door knob or screwing in a light bulb, also become difficult.
Malfunction of internal body processes, controlled by the autonomic nervous system, may also occur early. Blood pressure may decrease dramatically when a person stands up, causing dizziness, light-headedness, or fainting—a condition called orthostatic hypotension. Blood pressure may increase when a person lies down. People may need to urinate urgently or frequently or may pass urine involuntarily (urinary incontinence). They may have difficulty emptying the bladder (urinary retention). Constipation is common. Vision becomes poor. Men may have difficulty initiating and maintaining an erection (erectile dysfunction).
Other symptoms of autonomic malfunction may occur early or late. Less sweat, tears, and saliva are produced. As a result, people may become intolerant of heat and have dry eyes and mouth. People may have difficulty swallowing and breathing. Breathing may be noisy and high-pitched. During sleep, breathing may stop repeatedly or become inadequate (sleep apnea). People may lose control of bowel movements (fecal incontinence).
Many people are confined to a wheelchair or are otherwise severely disabled within 5 years after symptoms begin. The disorder results in death 9 to 10 years after symptoms begin.
Diagnosis:
The diagnosis is based on symptoms. However, symptoms may resemble those of other disorders, making the disorder difficult to diagnose.
The only sure way to diagnose multiple system atrophy is to examine brain tissue after death. Nonetheless, some tests help with the diagnosis. For example, if
Treatment:
No treatment can cure multiple system atrophy. However, a combination of simple measures and drugs may help relieve symptoms. Parkinsonism: Continuing to do as many daily activities as possible helps maintain muscle strength and flexibility. Stretching and exercising regularly may also help. Drugs used to treat Parkinson's disease, such as
As the disorder progresses, people may need a breathing tube, a feeding tube (usually surgically inserted), or both. Physical, occupational, and speech therapists can teach people ways to compensate when walking, doing daily activites, and speaking become difficult. Social workers can help people find support groups and, when symptoms become disabling, home health care or hospice services.
SLEEP DISORDERS AND MULTIPLE SYSTEM ATROPHY DISEASE:
Sleep disorders are so common in multiple system atrophy that they should be considered an integral part of the disease. Sleep fragmentation occurs in more than half of the patients, with sleep onset and sleep maintenance insomnia. Periodic leg movements of sleep are also common, although they are generally asymptomatic. REM sleep behavior disorder, a parasomnia in which the patient presents vigorous movements associated with intense dreaming dreaming during REM sleep, is detected polysomnographically in almost all the patients with variable severity. Nocturnal stridor is produced by obstruction on the glottis level. The cause of stridor is unknown but two alternative explanations have been proposed: paralysis of the muscles opening the vocal chords and excessive contraction of the muscles that close them. A combination of both, however, is the most likely explanation. Nocturnal stridor is associated with decreased survival and its treatment is based on continuous positive air pressure (CPAP) when it occurs only during sleep or tracheostomy when it worsens and becomes also diurnal.
My Wife Valerie
MY WIFE, MY CAREGIVER, MY BEST FRIEND VALERIE!!
MULTIPLE SYSTEM ATROPHY SYMPTOMS:
MSA damages the nervous system, which can cause the following symptoms:
Changes in facial expression
"Mask" appearance to face
May be unable to close mouth
Reduced ability to show facial expressions
Staring
Difficulty chewing or swallowing (occasionally)
Disrupted sleep patterns (especially during rapid eye movement (REM) sleep late at night)
Dizziness or fainting when standing up or after standing still
Frequent falls
Impotence
Loss of control over bowels or bladder
Loss of fine motor skills
Difficulty eating
Difficulty with any activity that requires small movements
Writing that is small and hard to read
Loss of sweating in any part of the body
Mild decline in mental function (may occur)
Movement difficulties
Loss of balance
Shuffling
Walking pattern (gait) changes
Muscle aches and pains (myalgia)
Muscle rigidity
Difficulty bending arms or legs
Stiffness
Nausea and problems with digestion
Posture difficulties: may be unstable, stooped, or slumped over
Slow movements
Difficulty beginning to walk or starting any voluntary movement
Freezing of movement when the movement is stopped, unable to start moving again
Small steps followed by the need to run to keep balance
Tremors
May become severe enough to interfere with activities
May be worse when tired, excited, or stressed
May occur at rest or at any time
May occur with any action, such as holding a cup or other eating utensils
Finger-thumb rubbing (pill rolling tremor)
Vision changes, decreased or blurred vision
Hearing Impairments
Voice and speech changes
Difficulty speaking
Monotone
Slow speaking
Voice is low volume
Other symptoms that may occur with this disease:
Confusion
Dementia
Depression
Sleep-related breathing difficulties, especially sleep apnea and a blockage in the air passage that leads to a harsh vibrating sound
Seborrheic dermatitis
PHYSICAL THERAPY FOR MSA:
PHYSICAL THERAPY:
The symptoms of Multiple System Atrophy disease may cause you to move slowly everyday. You may also feel pain, tightness, and weakness, especially in your muscles. The use of physical therapy may help with these symptoms. This is what sent me out locally to hook up with a physical therapist to help along my path with physical exercise. There are so many different exercises that can actually be performed without even getting out of bed. And for more fun many folks have enjoyed WII system type workouts. Whatever it takes to help us move!!!
Usually you may need to get a doctor's order to be seen in physical therapy. If you feel you can benefit from physical therapy, do not hesitate to ask your doctor for a referral. Medicare covers the first 15 visits so my advice to medicare patients is to spread out your visits to obtain the very best exercise regiment. There are a few great services such as physical therapy out there that can help us along.
As I'm sure you already know physical therapy cannot cure MSA, because at this time, neurological damage cannot be reversed. However, therapy can enable you to compensate for the changes brought about by the disease. A physical therapist can teach you exercises to strengthen and loosen muscles. (In my case mostly loosen muscle stiffness.) Many of these exercises can be performed at home. The goal of physical therapy is to improve our independence and quality of life by improving movement and function and relieving pain.
Here's what physical therapy can help with:
* Balance problems.
* Lack of coordination.
* Weakness.
* Fatigue.
* Immobility.
* Pain
* Walking gait.
***A physical therapist can make recommendations for physical therapy at home, at an outpatient facility, or at a nursing facility. (Rehabilitation facilities as well.) In many cases the use of exercise is our best form of treatment for our disease.
David
http://david1000.weebly.com
FOCUS ON MSA:
It is widely believed that MSA disorder is very difficult to diagnose in patients, mainly because one set of symptoms may surface before the other is figured out. Neurologist may perform various tests and check the patients medical history to determine whether a diagnosis of MSA is appropriate. (In my case nearly 4 hours of somotosensory testing.) Some of the tests administered to me over the months to obtain a diagnosis included CT, MRI, PET, and tilt-table testing. (Keep in mind many of these produce images used to rule out other diseases more than finding MSA.) Tilt-table testing for orthostatic hypotension is usually very beneficial for spotting a very leading symptom of our disease. But the best practice for a diagnosis is obtained by those who listen and recognize our symptoms.
Now, considering that there is no cure for multiple system atrophy at this time the disorder can be devastating for both the patient and his or her loved ones. Both men and women are believed to be more or less equally susceptible to developing the condition. While most cases involve men and women in their 50's, younger individuals have also been diagnosed with MSA. (We have several patients here on PLM that are less than 50 years old.) The disorder is characterized as neurodegenerative, and individuals may have a life expectancy of up to 10 years following diagnosis. (Remission from the disorder is believed to be nonexistent.)
In less severe cases involving cognitive decline, men and women of all ages have been known to seek out different options, such as prescription drugs and supplements to boost memory, focus and alertness. While medications may be appropriate on a case by case basis, as determined by our doctors, in other cases a natural supplement may improve cognitive performance. These usually help boost our neurotransmitter activity in the brain.
I love baseball so let me use a baseball MSA recap:
POSITIVES 000 001 000 1
NEGATIVES 110 100 11- 5
RECAP OF GAME:
POSITIVES:
There are drugs that may reduce symptoms in some individuals.
NEGATIVES:
According to many reports the disorder may be difficult to diagnose.
Symptoms may include slower movement and heart rate problems.
Reports indicate there is no cure for this disorder at the time of this ballgame.
Prescription drugs may cause undesirable side effects and reactions.
Men and Women may be at equal risk of developing the condition.
Point is it is very hard to prepare for a degenerative disorder such as MSA, and since there is no cure as of yet, it is considered one of the more devastating health conditions on record. There are many different forms of cognitive decline, including MSA, that are addressed through a combination of prescription drugs, clinical treatments and even natural supplements. Don't give up the focus on whatever help you can latch onto. Your not alone in this battle!!
David
http://david1000.weebly.com
DEMENTIA AND MSA:
Many times I don't know what day of the week it is, or what day of the month, or even what year it is. I'm always thinking its still 2008. Sometimes I still write down 2007 when I sign papers for my 6 year old to take back to school. And bless his 6 year old heart when he corrects me for putting down 2007. And thank goodness I look out the window once in a while to know its garbage day. Others around me don't understand why, and of course on comes my depression from seeing everyone's frustration. I just hate being a burden on everyone and usually favor the quiet side and isolation as the end result of the dementia.
I can honestly say I have enough signs of dementia to say it is a symptom of illness. It may not be directly linked with MSA, but most likely linked to the atrophy of my temporal lobes all my PET scans nicely showed. My neurologist specialist explains that with aging come cognitive decline, thus making dementia not a direct symptom of MSA, but part of aging. So what my doctor is saying is that dementia remains a nonsupporting feature of MSA with newest criteria updates. So my question is how many of us before retirement age and younger experience some forms of dementia?
My short term memory is getting worse everyday. I often get turned around when out of my surroundings also. And unfortunately a great deal of long term events in my lifetime are also forgotten. Recently, I went to my sons baseball game in a town 8 miles down the road that we actually lived in a few years ago. As we got there I took my time getting to my seat, sat down and made an announcement, "wow I've never been here before." Everyone in my family was so fast to point out that this particular field I used to take the boys to often to hit "pop-ups" say 5-6 times a year. Oops!!! Yesterday I walked out of the house and walked up the street to the general store. I walked around inside and then all the sudden I'm wondering where I'm at, and why I'm even in the store with no money to buy anything in the first place. Luckily I could see the house down the street to walk home.
When I finally do think about what I'm doing it really scares me especially since I'm only a couple months away from only 46. Except for the treatable types of dementia, there is no cure to this illness. (Just my luck it seems.) Dementia is a frightening illness for many of us. We all want our brain function to remain intact and our memories to remain unharmed. For those experiencing dementia symptoms, it is a frustrating experience. My neurologist specialist just put me on aricept so I hope that will help me out some. This particular medication is very good for beginning stages everyone tells me. I just hope my neurologist grades my mini-mental exam using a curve on my next visit. (Not to mention the fun abbreviated mental test.) At least warn me when he shows me something that 20 questions from now its going to be on the test. LOL
The more I write on my dementia the more I want to throw in cognitive issues as well. Cognitive disabilities come in many forms. Many involve difficulties or deficits involving problem-solving, attention, memory, comprehension, reading, and verbal comprehension. So there are many cognitive type disabilities like Autism, Dementia, Parkinson's disease, Down syndrome, etc. The one thing I do know is the greater the severity of the cognitive disability the person experiences, the more difficult it is for the individual to comprehend.
Updated May 2012: DIAGNOSIS
David S. Dennis
DOB: 08-14-1965
ICD-9 CODES: PROBLEM: STATUS: DATE DIAGNOSED:
------------------------------------------------------------------------------------------------------------------------------------------
333.0 MULTIPLE SYSTEM ATROPHY CHRONIC 07/05/2007
337.9 DYSAUTONOMIA CHRONIC 01/18/2008
388.31 TINNITUS CHRONIC 09/21/2007
458.0 ORTHOSTATIC HYPOTENSION CHRONIC 07/05/2007
331.82 PARKINSONISM DEMENTIA CHRONIC 01/18/2008
473.0 MAXILLARY SINUSITIS CHRONIC 09/21/2007
784.91 POSTNASAL DRIP CHRONIC 09/21/2007
724.3 SCIATICA BACK PAIN CHRONIC 07/05/2007
788.20 URINARY RETENTION CHRONIC 07/05/2007
784.51 ATAXIC DYSARTHRIA CHRONIC 10/15/2010
787.29 DYSPHAGIA CHRONIC 08/26/2011
934.90 ASPIRATION CHRONIC 11/14/2011
527.7 XEROSTOMIA CHRONIC 09/15/2010
530.5 ESOPHAGEAL SPASM
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