Multiple System Atrophy

It is rare and hard to get a dx. How long has he been having symptoms. I have the symptoms, but have not been dxed. Sorry your husband has had a dx.

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.

Are you talking about the Syn-One Skin biopsy test or something else? I’ve been told by some good doctors I don’t have it, but I think I do, nothing else would explain the diverse symptoms I have including orthostatic hypotension. I have plans to get the Syn-One test, but then again, it’s not without error. So here we are. Does your husband have any autonomic symptoms like heart rate, erratic B/P, sweating or not sweating? It’s a lot to deal with, isn’t it?

When he stands he feels dizzy and when he stands to pee, he falls down. He doesn't sweat. It is A LOT to deal with. We see a PA tomorrow. I am not happy. Our wonderful Doctor left. We live in Maine and it HARD to keep good Doctor's. I report everything to the Specialist (Neurologist). Poor guy..I leave him messages with what's going on. Thank you for the hugs and again if we can help..please..this is a hard road.

Yes the Neurologist has ordered a Syn-One Skin biopsy test, but we already are dealing with what we know to be the truth. I don't feel at this point we need it, but if you are in the early stages, by all means you need to find out what is going on. I haven't talked about all of it..swelling legs, the rash looks like a 3rd degree burn, the falling and he will NEVER tell me he has run out of diapers again. There are other developments, but I would like to talk to the DR.

@shelleystolfi
I am so sorry to hear of this diagnosis for your husband. You both have quite the journey together ahead of you. Pray for you for strength, support and peace. 🙏
1. https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/symptoms-causes/syc-20356153
2. https://my.clevelandclinic.org/health/diseases/17250-multiple-system-atrophy
3. https://www.ninds.nih.gov/health-information/disorders/multiple-system-atrophy
4. https://missionmsa.org/finding-support/
5. https://www.vumc.org/autonomic-dysfunction-center/patient-advocacy-groups
6. https://rarediseases.org/organizations/multiple-system-atrophy-coalition/
7. https://www.brainsupportnetwork.org/BSN-MSA-resources-2024-05.pdf
8. https://copingwithmsa.com/2023/12/23/part-2-of-a-4-part-series-on-the-importance-of-caregivers-to-an-msa-sufferer-the-evolving-challenges-of-caregiving/
9. http://www.dysautonomiainternational.org/page.php?ID=78

Shelly, I looked up the rash name, and it looks like it’s an autoimmune type rash. I have several autoimmune diseases, but I’ve never seen anywhere that they are connected to MSA. I’m sure that rash as you described it is very miserable for him and for you. If you can arrange it, think about getting some help so you can preserve yourself. No patient wants the one they love to make themselves ill caregiving. Also, if some of the bigger things like showering, etc could be managed by an outside caregiver there might be more time to enjoy each other’s company and walk down the memory lane of old days. Keep in touch. I’m praying for you both. ❤️

I would definitely recommend physical therapy immediately and a diet change to have plant based foods. Cut out excessive sugars, dairy and gluten. This has halped me immensely!

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.

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.