Multiple System Atrophy

Posted by shelleystolfi @shelleystolfi, 6 days ago

Has anyone had any experience with this disease? My husband has been diagnosed with it.

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@shelleystolfi

Went to the Dr.'s today (actually a PA). Someone asked about blood pressure..his is 106/60. Blood and urine tests were taken. He also ordered a creme for Joe's leg. The PA sent a picture of the "blisters" to his Dermatologist friend and she hadn't seen anything like it. If you look up bullous pemphigoid, that is what his left leg looks like. Both of his legs were swollen today and we are hopefully getting a "newer" walker and a wheelchair.

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I hope they can help with the rash, that’s got to be miserable. My B/p always drops low after eating, that has been going on since at least 2019. For as long as I’ve had autonomic symptoms, I figure my time must be about up. I only started having tremors, breathing problems and restless legs about this time last year. I’m so glad he’s getting newer hopefully better equipment to help with mobility. Did you like the PA, hopefully he was on point on this very important patient interaction.

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@shelleystolfi

This is what Joe has:
While multiple system atrophy (MSA) is a neurological disorder, it is not directly known to cause rashes. However, there is some evidence suggesting an association between MSA and bullous pemphigoid (BP), an autoimmune skin condition characterized by blistering.

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Wow, that’s interesting. There are so many things that are yet to be uncovered about this disease, and in the end, autoimmune disease is a weird thing and could actually be involved in some way. Some places I’ve read they compared it to prion disease (CJD). For now, I’m just hoping and praying your husband gets relief from that awful rash.

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@shelleystolfi

Thank you. His illness began in 2021 with constipation, urinary and prostate problems. Everyone ran to address the prostate problem and not anything else. He thought the flomax they put him on was making him dizzy. Well. to shorten things, his prostate went back to normal. We found a Doctor who sent us to a wonderful neurologist and here we are. My husband is 52. He can hardly walk and talk. He has started shaking a bit and has developed a rash called bullous pemphigoid. He can still eat!! The Neurologist had given me a sticky note with 2 possible diagnosis and my husband fit the diagnosis of multiple system atrophy to a tee. You are right, it is very rare and not easily diagnosed. A skin graft is the next test. He has been through everything else. Our thoughts are with you and please if we can help, let us know.

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Hi, I am a new member to this site. I was previously diagnosed with myasthenia gravis, and sent to the specialized center at Upstate Medical in Syracuse. To my surprise, they diagnosed two things going on in me: MG and to my surprise MSA because the symptoms are exactly as you describe. The loss of site initially and then general, overall profound muscle weakness were the two symptoms that fit MG; all the others (incontenence, drooling, tremor, balance issues, shuffling, etc. fit MSA exactly. I’m working at adjusting, but it is not easy.

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@nf11

Hi, I am a new member to this site. I was previously diagnosed with myasthenia gravis, and sent to the specialized center at Upstate Medical in Syracuse. To my surprise, they diagnosed two things going on in me: MG and to my surprise MSA because the symptoms are exactly as you describe. The loss of site initially and then general, overall profound muscle weakness were the two symptoms that fit MG; all the others (incontenence, drooling, tremor, balance issues, shuffling, etc. fit MSA exactly. I’m working at adjusting, but it is not easy.

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I meant to type sight when I typed site. And, I forgot to mention that I too have developed a strange rash. It initially appears as a rectangle that contains small blisters and a rough tecture, that itches terribly. I’ve asked my dermatologist to look at it. I let you know what she concludes (the folks in Syracuse did not think it was caused by a disease).

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@nf11

Hi, I am a new member to this site. I was previously diagnosed with myasthenia gravis, and sent to the specialized center at Upstate Medical in Syracuse. To my surprise, they diagnosed two things going on in me: MG and to my surprise MSA because the symptoms are exactly as you describe. The loss of site initially and then general, overall profound muscle weakness were the two symptoms that fit MG; all the others (incontenence, drooling, tremor, balance issues, shuffling, etc. fit MSA exactly. I’m working at adjusting, but it is not easy.

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I am so sorry for your dx. How long have you been having these symptoms? So many folks take a long time to get a dx. Sounds like you got yours pretty quickly. Hoping you have a good support system. Praying that things will go slow and you will have many good days ahead. ❤️

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@nf11

I meant to type sight when I typed site. And, I forgot to mention that I too have developed a strange rash. It initially appears as a rectangle that contains small blisters and a rough tecture, that itches terribly. I’ve asked my dermatologist to look at it. I let you know what she concludes (the folks in Syracuse did not think it was caused by a disease).

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Please let us know what the dermatologist says. We have yet to get the medication, but good old Irish Spring dried it up!!

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@shelleystolfi

Please let us know what the dermatologist says. We have yet to get the medication, but good old Irish Spring dried it up!!

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Take the wins where we find them. So glad the rash dried up, for comfort that’s huge. ❤️

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@nf11

Hi, I am a new member to this site. I was previously diagnosed with myasthenia gravis, and sent to the specialized center at Upstate Medical in Syracuse. To my surprise, they diagnosed two things going on in me: MG and to my surprise MSA because the symptoms are exactly as you describe. The loss of site initially and then general, overall profound muscle weakness were the two symptoms that fit MG; all the others (incontenence, drooling, tremor, balance issues, shuffling, etc. fit MSA exactly. I’m working at adjusting, but it is not easy.

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When we finally ended up at a neurologist's office, and after several visits, the Dr. handed me a sticky note with: Multiple System Atrophy-C...the other Spinocerebellar Ataxia (SCA Type 3). I did the research and his symptoms clearly led to MSA-C. There is also MSA-P, which resembles more parkinsonian symptoms, i.e. stiffness, tremors, etc. Talk to people and do your research, these are all "tricky" diseases.

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