MSA-C?

[evamariejohnson]

I think my husband has MSA. He has not been diagnosed. He has been sick for 6 1/2 years. He’s been out to Mayo, down to U of M, and now doctors through Froederts in Milwaukee. I don’t know what to do, I feel so alone.

[LoveMyGod]

What are the doctors saying? Has he had the Syn-One skin biopsy? I don’t understand this difficulty in getting doctors to be more aggressive about dx. I see you already went to one of the centers for excellence….Mayo Clinic. I see they have a test for it done with CSF too, recently in the news.

[evamariejohnson in reply to LoveMyGod]

No, I don’t think so. I will suggest he get this done. Thank you!

[LoveMyGod in reply to evamariejohnson]

It’s not easy to find a doctor that does them. Look for an MSA Center for Excellence Clinic. You can find a list of them on missionmsa.org…….Mayo Clinic is on the list, check back with them now, maybe they can give him the Syn-one test or the new test with CSF.

[Yanno]

Hello Eva,

Sadly, I don't have a magic wand here in the UK to wave and get the diagnosis you want - or probably don't want. My thoughts are with you however and you don't need to be alone as there are so many on this forum who have been through the difficulties that you are currently going through.

Things are a little different in the UK however for many the journey is a long one before getting a dx of MSA. There's many useful factsheets on the MSA Trust website which may be of some help to you.

Take care, Ian

[Frenchoak]

MSA-c is difficult for the neurologists to diagnose as there is no actual test it seems, in the uk 🇬🇧 anyway. It seems more of a process of elimination of other things first, then MSA-c is what you’re left with! I first had symptoms from 2019, I thought other things like stress, menopausal, getting older (I’m 61now!) not fit etc! And Drs dismissed me till I got a good one in nov 21 who ordered Ct and mri scans and referred me to a neurologist………long story short, eventually oct 24 Professor Hadjivassiliou at Sheffield Ataxia Centre told me it’s “probably “ MSA-c! It takes time to diagnose and depends on progression over time it seems! Sorry, this probably doesn’t help you much. You’ve come to right place for right information and support. You are NOT alone in this. My thoughts are with you both. It’s hard. Take care. 😊

[evamariejohnson in reply to Frenchoak]

My husband started losing interest in things. In August 2019 I noticed his legs had fasciculations. It scared me, as my mom had als. So, we immediately got him in to a neurologist. They did MRIs of his spine. They noticed degeneration in different parts. The symptoms just kept coming: balance, swallowing, constipation, his eyes bother him, etc. Do any of these symptoms correlate to yours?

[PineEater]

evamariejohnson

Hi

Please don't feel so alone. Contact the MSA trust. Please note that

the Syn -one Test synucleinopathy that is used for the diagnosis of synucleinopathy can in combination with the other clinical features help neurologists make a more specific diagnosis. Of course, this test doesn't distinguish between synucleinopathies. Hope your husband is getting the required symptomatic treatment. What medicines is he taking for various symptoms he has? Best wishes to yourself and your husband.