Diagnosis was just as bad as ALS

[LUTHER]

I came back to update after 19 months, where I wrote “ I feel so helpless”. Finally got diagnosed with Multiple System Atrophy.
My current situation is complete autonomic system failure, which is closing my breathing and at any moment, by brain can stop sending signals to breathe. It’s a cross between Parkinsons and ALS with no treatment and not test other than autopsy! It shuts down bowels, lungs, eyes, swallowing,brain, voice, muscle spasms, stiffness!
I only send this to thank all those who were patient with me in 2018 as I searched for answers!
And I also want others to know to search for other possible avenues, especially when the wonderful people here have to you No ALS!

 

[KarenNWendyn]

Previous threads here:

I feel helpless

For the last four months, I have experienced a rapid decline in health. It started with severe constipation, in which after every series of gastrointestinal test, nothing was found,except that my parsistalsis had slowed tremendously. From that point I began having problems with my legs, numbness...

www.alsforums.com

Update from I feel so helpless

Previous thread here. Good evening. Just got my second Emg. This one was done at a ALS specialist hospital accredited by the ALS Association. The Dr was extremely thorough and explained everything he did. It took about 2hours and he checked every where except my eyes! Conclusion was Mildly...

www.alsforums.com

Im sorry you got that diagnosis. Not ALS with the clean EMGs, but as you said, not good either. I hope you find some comfort in the time remaining. Thank you for updating us.

 

[Nikki J]

Sorry to hear this. As you point out there are many diseases that can cause worrying symptoms and asking what is wrong rather than is this is ALS is the correct approach.

thank you for returning to let everyone know. Wishing you peace and comfort

 

[lgelb]

Luther, do have a look at clinicaltrials.gov to see if there are clinical trials for which you might be eligible, and take advantage of resources such as the MSA Coalition. All the best.

 

[KimT]

Luther, I'm so sorry. I've read up on the disease and hope you are getting the correct medicine and care to help your quality of life.

 

[LUTHER]

Luther, I'm so sorry. I've read up on the disease and hope you are getting the correct medicine and care to help your quality of life.

I’m actually getting no treatment because very few doctors know what to do! It doesn’t respond to Parkinsons drugs, and I can’t take anything for insomnia because it can kill me in my sleep. They gave me a CPAP when I need a BIPAP because I cannot exhale. i really have no support and I have lost my voice so I can’t even explain myself to doctors

 

[Kristina1]

I see you are in New Haven CT. Have you reached out to the local MDA?

 

[ShiftKicker]

Luther, I sent you a link via private message a while back. I do recommend you have a look at the FB groups as there are many people who can understand the issues that arise with MSA- which are unique from issues with ALS. You would be amongst peers and people who understand what you are experiencing.

MSA is considered under the umbrella of Parkinson's disease and your local chapter of the Parkinson's Association can likely connect you to resources. There is also a Nat'l association for MSA- an online search for "Multiple System Atrophy Coalition" will bring up the link. They will also be able to direct you to the appropriate resources.

I am so sorry you are struggling to find proper support. I am hoping the above recommendations can help you.

 

[Nikki J]

you might also consider a consult at mgh Dr Schmahmann and his department participated in the natural history study and also the global task force on msa. I realize travel is diificult but once established mgh neurology does televisits when appropriate