Tuesday, August 18, 2009

Toward a better understanding of MSA

I have Multiple System Atrophy (MSA). This is a progressive, degenerative, and fatal disease of the brain. At this time it affects multiple areas of my brain including my left cerebellum, my midbrain, my left frontal lobe, and my left temporal lobe. The autonomic system that controls blood pressure, balance, and speech, if the most noticeable.

Some of my symptoms include:

  • Balance problems: Falling frequently and unexpectedly
  • Vertigo and/or dizziness when standing or walking
  • Unable to walk or stand for more than a short period of time
  • Hyperventilation during movement
  • Muscle weakness
  • Inability to look up or to the side when walking, resulting in bumping my head on anything that projects out just above my eyes
  • Speech problems, stuttering, unable to speak the words I am thinking
  • Hesitation when asked a question as I translate the words
  • Choking and swallowing problems, especially when drinking liquids
  • Taste and smell differences
  • Inco-ordination – knock things over and drop things frequently, writing is difficult
  • Muscle stiffness after sitting for more than a short time
  • Breathing difficulties

What is the progression of MSA?

Disease progression in MSA is quicker than in Parkinsonism. Almost 80% of patients are disabled within 5 years of onset of the motor symptoms, and only 20% survive past 12 years. The mean survival is roughly 6 years. Rate of progression differs in every case and speed of decline may vary widely in individual patients.

Patients usually have autonomic nervous system dysfunction first. When MSA begins with non-autonomic features, imbalance is the most common feature. This difficulty in maintaining balance may be due to either cerebellar or Parkinsonian abnormalities. Some patients complain of stiffness, clumsiness, or a change in handwriting at the onset of MSA.

MSA progresses over the course of several years to cause more widespread and severe symptoms. Orthostatic hypotension can cause fainting and falls. Loss of coordination, slowed movements, and rigidity can interfere with activities of daily living.

Some patients with MSA have mild loss of cognitive abilities, with impairments in attention and speed of thinking.

Complications include:

Progressive loss of ability to walk or care for self

Difficulty performing daily activities

Injuries from falls/fainting

Side effects of medications

Orthostatic hypotension (a large drop in blood pressure upon standing) is common and may cause dizziness, dimming of vision, head or neck pain, yawning, temporary confusion, slurred speech, and if the hypotension is severe, the patient may "faint" upon arising from a recumbent position.

In spite of low blood pressure while standing, it is common for MSA patients to have high blood pressure when lying down. A fall in blood pressure following meals or in hot weather or following infection is quite common.

The concurrent involvement in MSA of multiple brain systems subserving movement, including the striatum, cerebellum, and cortex, leads to the movement disorder as often being the most profound disability. Hoarseness or even vocal paralysis is relatively common, as are sleep disturbances, including snoring and sleep apnea. The ability to swallow foods and liquids may be impaired.

How long can I expect to live?

The probable outcome is poor. There is a progressive loss of mental and physical functions until general debilitation develops. Early death is likely. The mean survival is roughly 6 years. Most people who are diagnosed with Shy-Drager syndrome die within seven to 10 years after symptoms begin. It is rare for a patient to survive 10 years.

The autonomic abnormalities are seldom the direct cause of death. A significant number of patients develop laryngeal stridor and difficulty swallowing, which can lead to pneumonia.

Pneumonia is the most common cause of death, although irregularities in heartbeat or choking may be responsible for death in some patients. Breathing problems such as aspiration, stridor (high-pitched breathing sounds due to airway obstruction), or cardiopulmonary arrest are common causes of death.

In addition, many patients with MSA experience periodic respiration and in some cases this may lead to a critical loss of respiratory drive, so called Ondine's curse.

Pulmonary hypertension may occur during apnea. The most common causes of death in patients with MSA are pulmonary embolus, apnea, and intercurrent infection.

Treatment

Currently there is no cure for MSA and no known means to slow progression of the disease. A number of drugs can be used to treat the various symptoms of MSA, although they become less effective as the disease progresses.

32 comments:

  1. I wish I could talk to other people that has msa.I have had it about 3years now I think i am going crazy.So if anybody read this and has it you can e-mail me at yamahavmax53@aol.com thanks.
    Randy

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    1. My brother we 50 yrs old he was a nurse for 21 years. It has been 7 years now that he has MSA.He walked 5 miles and volanteered at a hospital until a year ago.Even with the trumers and pain he keeps moving,the depression is bad now because he cant do much.He is using a walker now.I believe has drive to keep going has paid off.So keep on living dont give up.

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    2. I have dysautonomia including mutiple system atrophy and neurally mediated syncop or postural orthostatic intolerance. This disease is a terminal illness. I also have RDS/CRPS or Chronic rapid pain syndrome, EDS or Elders Daners Syndrome, and a gene defect called alpha1 antitrysiprin deficiency. This disease is an autonomic nervous system disorder so it effects my entire body in odd ways. I have fainting spells and cant stand long or i start sweating profusely and my breathing is terrible cause my heart speeds up with orthostatic hypotension, Pulmonary hypertension and in constant atrial fibrilation, congestive heart failure a high cholesterol, bronchial asthma, COPD and emphysema with a deviated septume sleep apnea, and a previous collapsed lung, copd. I also have fibromyalgia, osteoporosis, osteoarthritis, psoriatic arthritis, gout, myofacial pain RDS/CRPS which leave me in excruciating pain. My C5 and C6 verterbrae are protruding and herniated so i am leaking spinal fluid and can barely turn my neck or walk and in many cases can not. My mrsa flares up leaving me needing lymph nodes and cysts lanced called Lymphadenitis . I have severe restless limb syndrome actually dystonia and take parkinsons meds for it, two torn meniscuses and ligament in left leg, Part of my right leg is gone from mrsa which became necrotic with sepsis (toxic shock syndrome), and i lost a huge section of it from gangrene from a car wreck in 2007 where my neck, occipital condyl, back (L1), ribs, skull, legs, hip and tailbone were broken. sometimes, just had an eeg and mri on brain came back abnormal. Have now been told i am epileptic, have migraines shortness of breath so bad i cannot even do menial tasks without pouring in sweat and getting severe chest pain, ezema, rashes, depression, extreme weight gain, borderline diabetes (runs low), gerd, incontinence and IBS, prolapsed bladder, frequent urination and sometimes no urine but feels like i gotta go with pressure. petimal seizures. Tired all the time and mood swings. Depression so bad I have gained 130 lbs and sometimes cannot even get out of bed. My orthopedic doctor wants to do surguries and injections for i aslo have a torn meniscus and ligaments as well as no cartiledge. I cannot take pain pills or even anti-inflammatory meds due to being on blood thinners for my permanent afib and Tylenol upsets my liver for i am post treatment for hepatitis c (chronic) and a fatty liver diagnosed in 1996 (0 viral lode/svr level thank god). I also have gerd and tourettes syndrome, epilepsy, am also now having severe neck and back spasms and Sleep apnea.

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    3. It seems no one knows what I am going through more often than not and that included the doctors. My primary care physician had to look up my disease before he knew what it was. Even I wasn't aware how quickly his place progresses as each month I find I can do less and find myself in more pain. My youngest blames me for being sick and thinks I am getting worse because I don't care for myself. My friends avoid me because I depress them so i avoid many people all together. I am 45 years old and was once a proud strong American/Samoan woman whom loved Harleys, poetry, just living period. I will never ride again. This settled in this year. The last time I rode we had to stop and I passed out from lack of oxygen. What if it happened whilst on the bike? I spend my days pushing myself to do more even though when I go out I am ill for days after due an immune system that betrays me. I look for support groups in Illinois and find that even mental health agencies near bye don't offer much besides anti depressants which my body doesn't tolerate. They gave me an end of life preparation kit which included a living will and power of attorney forms and every time i am in the hospital the Chaplain or Pastor comes and prays for me without fail. I am scared and I feel alone even though I am surrounded by my husband and family. I find myself screaming when I should be smiling and crying when I am alone. I want to be strong again. I want to with dignity. I do not want to die like this, losing a piece of myself daily because that much more of my neurological disease has progressed. I am begging people to help talk to our representatives and help find a cure. If nothing else where are the resources available to us whom are suffering alone?

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  2. My precious father died January 25, 2010. He was diagnosed with MSA in 2002. How we have grieved for years. I know he is free and whole now, but the sadness and missing him is like no other. Nothing prepared me for how difficult this is....LisaLTucker

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    1. I am feeling for you after reading your post I myself lost my father 4th may 2014 and I can't move on I don't know how I can .I like you just keep thinking dad is free of pain and suffering now. Sending hugs to you and take care.

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  3. HI MARY MY NAME IS RANDY SMITH AND I HAVE MSA TOO.I WOULD LIKE TO HEAR WHAT YOU ARE GOING THUR SO I KNOW WHAT TO EXSPECT.SO IF YOU WOULD E-MAIL ME AT YAMAHAVMAX54@HUGHES.NET.SO WE COULD TALK .GOD BLESS YOU.

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  4. There is a Yahoo support group that consist of people with this disease or caregivers of those with this. It has been exteremely helpful to be able to talk with others going through the same things. To join, go here for more info:
    http://msainfo.tripod.com/support.html

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  5. My father died recently due to this disease. I don't know till the last 3 weeks before his death that he is suffering from MSA. But the doctor diaognised it as parkingson plus sysdrome. I suppose these 2 are the same. Even after my father's death i was never told by the doctor that he is suffering from MSA. Maybe, even the doctor could not diagonise it. I,with the help of internet, could make out from his symptoms that he was actually suffering from MSA.

    If you want further details regarding this disease and symptoms and how you need to take care, please write to be on aajay25@yahoo.com.

    Please do not admit somebody suffering from this disease in ICU. That was the biggest suffering i meted out to my father. We should have stayed besides him , all the way till his death.

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  6. My grandmother is currently dying from MSA. It took over two years to diagnose. After bouts with pneumonia and bladder infections/UIAs she never felt well again. She started having stiffness and pain in her neck and shoulders and was diagnosed with Fibromyalgia which probably was rather the onset of MSA...In the last 6 months she went from being very active, driving, gardening, cooking, cleaning etc. to not being able to move at all. If you or your loved one has this disease and are still able to move, work on physical therapy to keep your muscles and joints active. Once they start to lock up it is very painful and difficult to regain mobility and strength. I wish we would have known what she had sooner...when it is close to the end there is much pain...the slightest touch hurts her. Get Hospice involved if possible.

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  7. My father in law has had this disease since being diagnosed in ~2007 with Parkinson's Disease. He is now in the hospital suffering with pneumonia and being "kept comfortable". I honestly don't think there's a worse disease out there than one which traps a completely aware person in their own body.
    He started out stumbling and falling and eventually progressed from a cane to a walker and then to an electric wheelchair. He now communicates by answering questions with nods or squeezing someone's hand to indicate 'yes'. Before this he used an alphabetical chart to spell out the words he wanted to say. He's had some ups and many downs during his time with this illness and the best thing to do for victims of it are to keep them comfortable and have patience with them when they are trying to communicate.
    I feel for everyone with this disease as well as their families who, in our case, have been the primary care providers.
    Wishing you comfort...

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  8. I have a brother who suffers from this I dont know what to do he was once a power lifter world champ this is so degenerating to him its unreal is walking is bad now talking is studdered but he wont let you help him he lives alone Im worried he will fall as he already has a few times. but he is so mean you cant even talk to him he dont want any help, I love him but am lost....I pray

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  9. My father had this dreadful disease for about 2 years from being dianosed as having Parkinson's and passed away from MSA June 23, 2012.
    He battled off and on from having low blood, UTI/bladder infections, aspiration, and finally Pneumonia. It was so hard seeing him slip away so fast, and not being able to help in any way.
    God Bless everyone that has MSA and or is caring for someone with it.

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  10. my friend has lost the ability to walk unassisted, spends most of the day in a wheelchair. slow speech, difficulty swallowing, difficulty processing information, cannot do daily living activities without assistance. Nothing I have found on the internet can tell me how far in the progression we are. He has had symptoms for years but was only recently diagnosed. please helpme.

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  11. My husband has been diagnosed with MSA and it took us three years to find this out. He was resistant to any medical treatments for anything long before that. It does not surprise me that your brother wouldn't want any help. His brain tells him he can do things but his body won't let him. I have talked my husband into going through all the tests and we are both accepting that even though there is nothing that can really change the course at least knowing helps and that he is taking every measure he can so he can make me feel better about this situation. He never realized how much stress the situation put on me that he was in denial of the disorder. I hope that if you can get your brother to read this he may have a change of thought that would allow him to understand he is not going to be able to do what he used to do. My husband wrestled in college and until he was 45, ran, played baseball and was very active. Slowly things have changed and there is nothing either of us can do. He can't live the life he did and he resists every chance he gets but he also realizes the reality. For me it's better to see him trying to do whatever might help him feel better even though we both know inevitibly nothing is going to work but at least he lets me help a little bit more.

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  12. Hi. My mother died form MSA (it was called Shy-Drager at the time) in 2001 when she was 63. It started in her 50s. Now my dad has just been diagnosed a few days ago. What are the odds of both contracting the same exceedingling rare and dreadful disease....

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  13. please pray for me. I have this dreadful disease.
    It fas affected my speech . my handwriting & my walking.

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  14. My husband has a friend who's wife was just diagnosed with MSA. She has been suffering with this for atleast 5 years and not one doctor could tell he what ist was until just recently. We found out today that she fell at home and fractured her back in two places and is in the hospital. She worked up until not too long ago and finally had to quit due to the many symptoms. We feel so bad for her and her family. We are not sure how close she is to the end but it does not sound good. No reply is necessary. Just wanted to comment on this dreadful disease.

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  15. My mother has this nasty disease. she is in hospital now with an infection, its horrible. Shes had this for about 5 years. I find it hard to see her this way. what happens at the end is hard to deal with. I ended up in tears after doing more research.

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  16. I just lost my dad 7/6/13 from this horrible disease. He started losing his balance and falling frequently, which went on for a few years. He eventually broke his hip, never to walk again. He was then diagnosed with MSA-C just 2 years ago. He could get by with a walker for a short period of time, then just able to pull himself up from sitting to get to wheelchair, then wheelchair only. His breathing changed and we took him to the ER where he remained for days. Upon sending him home, exactly 2 weeks and a day he passed. He lost all speech and was unable to eat. We sat at his side and spoke with him letting him know we where there. This is by far the WORST thing I have EVER experienced in my life. That was not my father laying on his deathbed. The past 2 years was a gradual decline but the past 2 weeks were so rapid everyday it was a noticeable change in decline. From bedridden state to death was just 2 weeks. It is a terrible thing to see a loved one go through and knowing they are aware and able to comprehend but unable to communicate with us. I can just see him in that bed and knew in that state that was NOT my father. As bad as it hurts and at such a young age, 68, it was best he let go. Life is so uncertain and unfair. For those who have a loved one with a terminal illness (or in good health) let them know how much they are loved, what they mean to you, and how much you value them. I wish I had just 1 more time to tell him "I Love You." He was robbed of his life, wife, and adult children at such a young age. He will forever be missed. It's a shame there is nothing that can medically be done to slow or cure this awful disease. Just over a week has passed and I feel so beside myself. The tears don't dry, the memories stay alive.

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  17. My husband has had MSA since 2001. He started losing his balance and falling. He was diagnosed with MSA in 2005 by the Neurologist at SF VA Medical Center. His decline was fairly slow. He was wheelchair bound by 2006; has speech problems; swallowing problems; and recently has behavioral problems caused by the damage this disease has caused to his frontal lobe. It is so difficult to see my husband of 45 years disappear before me. He served in the Vietnam War and was exposed to Agent Orange.

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  18. hi my granddad has had msa for 10 years well just a little ove.at fist it was diagnoised as parkinsons,he is bed ridden now and has a chest infection at the moment I am hopeing he is strong enough to fight it off but he looks dreadful and waxie.the doctor says if he is no better within 24 hrs he must go to hospital.this is a awful cruel disease my granddad worked hard all his life and now can not enjoy it.he is 74.

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  19. My husband has MSA. It was at least a relief to get a diagnosis. He has had problems for at least 3 or 4 years. I'm curious if the MSA is adding to the inability to control his diabetes. He has repeatedly had terrible low blood sugars lately. Does anyone else experience any paranoia? Maybe it is a side effect of the medicine instead of the disease. I appreciate the posts. There hasn't been a lot of personal information for me to try to understand the progress of this awful disease. I wanted something that would spell out ... this is stage one and what symptoms are stage two. However, it seems to vary. Prayers for everyone posting. I really do feel your pain. I'm right there with you. It is heartbreaking.

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  20. My sister has MSA. I cannot not believe that the medical profession has not tried to explore the cause of this dreadful disease. She has had it now for 8 years and is completely paralyzed and cannot talk or swallow. She has devoted husband and does everything he can to help ease her suffering. Our family is so lucky that he takes good care of her. She is so frustrated with the affects of this MSA and I know she is suffering so bad. All we can do is pray and watch a wonderful person slowly leave our life. I pray for her every night and hope she knows how many people are praying for her. I am dreading the day I get that phone call, but I know she cannot take much more.

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  21. I'm only 40 and was just looking at my medical records from some test I just had recently and they put shy-dragars syndrome as one of my diagnosis codes. I have not been for a follow-up, but I'm devastated. I have already been told I have postural orthastatic tachycardia syndrome and other dyautonomias. I'm also suffering from stiffness and spasms in my neck, as well as handwriting difficulties and an onset of difficulty concentrating and responding to people. I'm having to rush to get to the restroom on time recently as well. Reading this, I can see why that is in my chart, but I'm crushed. It is a death sentence and sounds like a horrible one. I'm in tears here. Why didn't my doctor tell me yet? This isn't something that should have been put somewhere I could find first.

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  22. Hi. My father in law was diagnosed with this terrible disease about 2 years ago. It is heart breaking to watch someone you care about, go from a really active man to someone who now struggles to speak, to drink, to eat, to walk......He is very emotional and cries at a drop of a hat....My 9 year old wants her Grandad back, it frightens her, when he has a choking episode, which he does regularly through the day, after every mouthful of drink. Since Christmas we have noticed a huge decline in him, its breaking my boyfriends heart, this man he sees before him, his dad, his hero, his best friend, they done everything together, is just wasting away in a body he can no longer control. Does he have a good quality of life? NO.....we as a family, do our best to make him comfortable and play the waiting game. Its a dreadful disease to have, a terrible way to watch a family member suffer.......

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    1. Your story is heartbreaking. I am so sorry and extend my deepest sympathies to you and your family.

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  23. I have been diagnosed with brain stem atrophy. I happened to see my MRI results that read I have symptoms of Olivopontocerebellar atrophy (OPCA). That I have atrophy in the Olives, Pons and Cerebellum. My neurologist told me he is unfamiliar with MSA but he said I don’t have it, he said I have OPCA and he said that is not serious like MSA. I have done a lot of reading on the internet about my symptoms and I know OPCA along with a couple of other diseases are now called MSA. My neurologist who admitted to me he knows nothing about MSA tells me I don’t have it. He said I don’t have the symptoms of MSA but I don’t think he knows what he is talking about and that drives me crazy.
    I have the following symptoms of MSA. I just had a pacemaker installed because of bradycardia; I have orthostatic hypotension, swallowing difficulties, cold hands and feet, stiff legs when first standing, and several other symptoms. I live in Newfoundland and I am having trouble getting a neurologist that can help me. It is hard enough suffering with these problems but having to wonder what illness I have is just about driving me to the end. I just wanted to let you all know that have MSA, I know how hard things are for you and I feel sorry for you.

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  24. My husband is a Vietnam Vet who was exposed to Agent Orange and it has done terrible things to Him he's recently been diagnosed with Parkinson's disease, but they mentioned MSA today. He lost his sense of smell and taste about 9 yrs ago. Do any of you with MSA have your Sense of smell still?

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  25. I have just lost my56 yr old father to Msa. I can say I would never wish this upon anyone as to watch this horrific disease take my dad was horrible. It was a battle that started in 2008 and ended in May 2014.from a strong working fit man to a wheel chair and trachyodomy in the last 2 years .I hope they hurry with a cure for this as it can not go on taking the best people as it hits you very unexpected and sudden in my father's case. I miss and love my dad and thank him for trying as long as he could go on in pain. Till it was to much. We still don't have a cause of death as it was such a sudden one but he was smiling the night before he passed and I kissed him as I went home to his grandchildren and the morning he was gone. Anyone going through this I am praying for you and please don't give up hope my dad didn't. :) xx

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  26. I been habing back pain leg pain numbness tingling all around my body urine infectins my doctor is now testing for msa I have never heard of this what a horrible disease very sad posts

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  27. My mum has MSA. She is 48 years old. The first symptom was a tremor at the left hand at the age of 43. Unlike the high majority, my mum is quite young. Sometimes she can speak in an understandable manner, whilst other times its impossible to understand her. We get into her arm and walk her to the bathroom. But as days pass i can see her getting worse. Its really difficult for us as a family to see her like this. May God help everyone with MSA and also the carers.

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