- This topic has 2 replies, 1 voice, and was last updated 9 years, 3 months ago by Mark.
June 18, 2014 at 12:05 am #1299MarkGuest
I am a 43 year old man from Minnesota, although my symptoms are not as severe as most here, I am concerned that I may have MSA. Symptoms started a couple years ago and have progressed over the last 6 months to the point where it’s difficult to function. My dad had a very aggressive form of Parkinson’s and passed away at 72 last year, after spending a long time taking care of him, I was cut out of the will by my stepmother after he passed and left without a job.
At any rate, I am in a horrible situation but my biggest concern are my physical issues, I’ve yet to get any answers from my neurologist, I’ve been to see him twice. I have ED, frequent urination, muscle fatigue/weakness (especially in legs) lightheadedness, can occur while sitting but is most severe while standing, have not had an actual syncope. Catch myself gasping for air sometimes, this can happen any time of the day but most often while sitting. Have noticed some mild tremors but nothing significant to this point. I can still walk (although not far) and still have the occasional good day but these are becoming more rare. I also have occasional balance issues, adding again that my legs often feel very weak.
My question is, doctors don’t seem to be taking this seriously, my blood pressure was high while lying down but was the same when I stood up, the PA only waited a few seconds to take it again though after standing. What can I say to my neurologist without telling him how to do his job? I am unable to work, I live on a friends couch, I am educated but my physical issues have drained my bank account, am going to apply for disability. Does it take a specialty clinic to get a diagnosis with this? I’m also wondering why this disease has only recently been discovered, what is the alternative diagnosis? Thanks much and God bless all of you!June 18, 2014 at 10:48 pm #1300John EllisGuest
You do have some of the symptoms of MSA-C. I was diagnosed in May of 2011 first with an atxia (Muscle dysfunction in hip) which caused me unable to lift up my right leg more than an inch or so which was noticed plus low conductivity from EMG on right side. Next the symptoms when from NOH to gastroparesis and chronic constipation (enema’s weekly). Your neurologist needs to run a tilt test to check from NOH and an EMG at least before ruling out other diseases like MS. Good Luck I hope you don’t have MSA. Took me 30 minutes to type this and I am not confined to a wheelchair because I am week and I fall often.June 18, 2014 at 11:48 pm #1301GaryGuest
I’d want to know for sure, thus I’d go to the Mayo Clinic. Best wishes.
Gary in WA
MSA dx’d 2008
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