kevinw
Distinguished member
- Joined
- Apr 15, 2008
- Messages
- 203
- Reason
- DX UMND/PLS
- Diagnosis
- 01/2008
- Country
- US
- State
- PA
- City
- Poconos
First, I never get my expectations up. I have come to accept the diagnosis of PLS and everything that comes with it. Second, I have one of the best ALS Specialist on the east coast, she has her own foundation, teaches & trains intern’s from a local university, and she is the regional MDA ALS Neurologist for their clinic. With all that being said, I was diagnosed seven years ago after the normal symptoms of starting in my left leg/foot tripping over small things and basically not lifting. So I started with my Primary Doctor thinking it was something minor. After the first exam he wrote a script to see a neurologist. I thought fine I’ll play along, maybe a nerve is pinched or something. So I saw the neuro and went through all the tests (ton of lab work including Lyme testing, Lumbar Puncture, Upper & Lower Scans, and an EMG). After all that he concluded PLS and was able to get me an appointment with this ALS Specialist that he interned under years before (people still ask how I was able to become one of her patients). So I start seeing the specialist every three months starting seven years ago. I continue the EMG tests for three years, focusing on my legs. Well over the years the legs are worse, very stiff walking and terrible balance. Also, my arms and hands work in jerking and slower motion. The worst is my speech is really beginning to go downhill. So, okay I expected all of this to progress. My problem is yesterday I had my normal three month appointment and expected everything to go as normal. But, she did the thing with bending the big toe up or down and asking which way it was. Not to be funny, but I had no idea, so I was guessing each time. Well, I guess I didn’t do so good guessing because now she ordered a chest x-ray. Now I don’t usually ask questions, but I did in this case. She said that due to my answers with the toe thing and I think she said about something she heard in my breathing, that she wants to eliminate a tumor on my lungs (here’s the big shocker…I still smoke). In addition to the x-ray she ordered up a lot more than my normal labs including Lyme testing again after seven years. Am I reading too much into this or could her mind be thinking something other than PLS? Sorry, I don’t ask for the results, numbers, or ratings of my usual test results…I just usually accept what they are saying.
