-
Please give your opinion
In December 2019 I started having fasciculations, myoclonus, and cramps. In April 20, neuro exam, EMG/NCV (no bulbar tested) at mnd disease clinic with mnd specialist. BFS was diagnosed. In June of 20 had to start seeing pulmonologist for what was believed to be breathing issues caused by reflux. My baseline FVC was 6.77 liters. Fast forward to May 21, another EMG/NCV done just to make sure no als. No physical exam but EMG/NCV were clean. Once again no bulbar test, but the same clinic with same neuro. In august 21, I had a full mri of head, neck, and spine, unremarkable. September 3rd, Another EMG/NCV, this time done at UT Southwestern at their mnd clinic. 7 areas on the body done, but only one bulbar area, 7th cranial nerve, for facial movement. I explained I was having trouble swallowing but the neuro told me since it had been 21 months since everything started it would show up somewhere else on my body by now. Bear with me. I had another PFT test done in April of 21, but never looked at the results (until yesterday) because the doctor told me the overall test was better than the one in ‘20, however, I looked at both tests yesterday and found out that my FVC had dropped 1.3 liters from the June 20 test to the April 21! I had a high res chest ct that showed no damage in the lungs, so… I did another PFT yesterday but don’t have the results yet. Also, this past Thursday, the left side of my jaw started getting really stiff when eating, so stiff it was hard to open. It has pretty much been stiff since, just not as bad. Does anyone think the doctors are right, do you think they are wrong? They all keep telling me I don’t have ALS.
Thanks for your time.
-
1 Reply
-
Hi Jerry, See below from website.
Best in Texas, Nationally Ranked
UT Southwestern Medical Center is ranked the No. 1 hospital in Texas for neurology and neurosurgery – and is among the nation’s top 20 hospitals for neurological care – according to U.S. News & World Report
It would appear that your are with a very high quality medical facility. On their website it specifically says that ALS is one of the areas they treat.
Giving you a right or wrong is way above my pay grade. I wish you the best on your journey.
Mike
-
Sorry I’ve been away so long. I agree, but I’m having my doubts. I’m still having new issues arise with no answers. I’ve voiced my new concerns with UT, but they are not willing to test me. They just keep telling me I don’t have it. When I told them of my new symptoms they said I should seek help from the disciplines that cover swallowing and chewing issues.
-
Log in to reply.