- Joined
- Nov 18, 2014
- Messages
- 4,873
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
Without going in to which doctors said what, I've gone to Mayo Clinic (Jacksonville), UF Shands ALS Clinic (Jacksonville) and University of South Florida ALS Clinic, along with my local neuro who has known me for 15 years.
I got one "doubtful you have MND" one "you have ALS" and one "we'll just have to follow you clinically before we can make the diagnosis.
This has been ongoing since December and I'm losing muscle mass, legs are getting tired, fasciculations are systematically spreading (started in bottom of left foot, now they are entire left leg, left butt left hand and face. Now they are starting right foot.
The latest is that I'm hoarse and my voice is weaker. This was pointed out by friends and relatives.
Has anyone had such difference in opinions? It's getting harder to walk and much more exhausting. They've done so many other tests to rule out everything possible (most were done at Mayo Clinic.)
I've had to get ADA accommodations to teach one semester at home because I have to make the financial decision of either taking a monthly pension or getting the lump sum. It would be an easy decision if I knew for absolute sure one way or another. My local neuro is agreeing with the one who said ALS because he has seen the changes.
I got one "doubtful you have MND" one "you have ALS" and one "we'll just have to follow you clinically before we can make the diagnosis.
This has been ongoing since December and I'm losing muscle mass, legs are getting tired, fasciculations are systematically spreading (started in bottom of left foot, now they are entire left leg, left butt left hand and face. Now they are starting right foot.
The latest is that I'm hoarse and my voice is weaker. This was pointed out by friends and relatives.
Has anyone had such difference in opinions? It's getting harder to walk and much more exhausting. They've done so many other tests to rule out everything possible (most were done at Mayo Clinic.)
I've had to get ADA accommodations to teach one semester at home because I have to make the financial decision of either taking a monthly pension or getting the lump sum. It would be an easy decision if I knew for absolute sure one way or another. My local neuro is agreeing with the one who said ALS because he has seen the changes.