Rapid Progression and autoimmune disease

Has your doctor ruled out atypical Parkinson’s, such as MSA? The progression rate is much higher than regular Parkinson’s. I have MSA, and walking has become difficult very rapidly.

I haven't heard of this. I'll try and find out more. I would be grateful if you could tell me more about your experience.
Thank you so much for connecting.

@esther589 ,

Here is a link to the Mayo Clinic info on MSA…
https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/symptoms-causes/syc-20356153
I was initially diagnosed with Parkinson’s, but after a year everything seemed to be progressing too quickly. My neurologist began to suspect MSA, based on my increasing symptoms (increased falls and balance issues, increased urinary urge incontinence, dripping sweat from my head when exercising, etc.).

I actua

Sorry, i hit the submit button accidentally…

Anyway, I traveled to the Mayo Clinic in Rochester, MN, where I went through a tilt table test, a brain MRI, and a very interesting sweat test. I then meet with a neurologist who examined me, and changed my diagnosis to Multiple System Atrophy.

I hope this is helpful. If I have any advice to give you, it is to stay as active as possible. If your insurance covers physical therapy, get signed up with someone who is familiar with movement disorders, and can push you to maintain your mobility as long as possible. As the saying goes…if you don’t use it, you lose it!

The two things this disease can’t take from me are my positive attitude and sense of humor!

@flycubs
Thank you.
I hope you are doing much better.

Consider asking about an evaluation at an autonomic lab if there is one accessible. Have you been tested for autoimmunity with Sed rate, CRP and
DNA antibodies. Inflammation also targets the nervous system. Resuming
IVIG may be an option if you tolerated it last year?

Yes, I'm hoping to get an appointment for IVIG early in the New Year.
I'm not familiar with any of the tests you have mentioned. I will investigate further.

@flycubs
My symptoms started with REM sleep behavior disorder at least 20 years ago - didn't understand the significance for a long time. Then developed orthostatic hypotension exacerbated by hot weather about 6 years ago - still didn't connect the dots. When REM sleep behavior disorder research suggested that up to 80-90% of people go on to develop one of the alpha synucleinopathy disorders it became REAL fast. The alpha synuclein disorders include Parkinson's, atypical Parkinsons (MSA-P or MSA-C) and Lewy Body Dementia. Right now I'm being treated for Primary Autonomic Nervous System Failure and being monitored for the development of one of the above diseases. No tremor, but gait disturbances (mild), slight imbalance, gut issues, urinary urgency, loss of sense of smell, etc. present. I'm meditating, talking to friends and trying to live one day at a time while regularly exercising and trying to stay positive. Hang in there - you are not alone.

Thank you so much.
Scary but helpful. I have also had REM sleep disorder for many years. I put it down to 'nightmares'.
Like you I take it one day at a time but right now the days are becoming much more difficult.
Thank you for sharing your challenges with me. It helps me to understand my illness better.
I appreciate your support and hope that you continue to be positive with each challenge that comes to you.
Meditation is a help for me also.

A respected Doctor here in North Carolina recommends reaching out to Dr. Laurie Mischley at Seattle Integrative Medicine, as she specializes in this field. She also wrote a book called Natural Therapies for Parkinson's Disease, which may be worth checking out. I believe her work goes beyond PD.
Dr. Mischley works via telehealth.
Seattle Integrative Medicine: (206) 525-8012
https://seattleintegrativemedicine.com/
Believe me, I have no interest in SIM other than to help those with these miserable disorders.
Regards,
Sagan