not sure of als/pls or something else

[tazzi]

Hi,
I'm looking for some guidance I guess.
Back about 1995, I had about 3 bouts of sensations I can only describe as my
muscles feeling like "concrete". It was kind of scarey but passed, and I forgot
about it eventually.
Now, forward to two years ago, all of a sudden I experienced severe muscle cramps,
in the calves. Some woke me from sleep. 360mgs. approx. codeine was needed to
just get by a day. Sometimes, I could feel the "rippling" of the muscles, unreal.
I then continued to have muscle pain, and massive body fatigue, and then the pain
has moved to include the arms, mainly upper arms. I have feelings of "weakness"
sometimes in the legs, knee to ankle, as if they will give out, but it doesn't happen.
My overall strength seems to be getting gradually worse. I've had breathing problems
off and on, not bad, but disturbing. I was found to have a possible hylar adenopathy
and mild eosinophilia, but CT showed it was clear, but, my breathing issues continue.
I do have established thyroid disease for years, and developed an odd tumor of unknown pathology at this time. I have had an elevated CK since the muscle/cramping,
and it never returns to normal.
For about 10 years I have had numb toes, EMG shows very mild nerve damage but nothing substantial.
I have a Neurologist but she so far says she thinks I'm ok, although I am in a muscle
disease study.
Any thoughts, suggestions?
Thanks, Tazzi.

[Al]

If it was me I'd be asking for a referral to Dr. Strong at the London ALS Clinic. It may not be a MND but he'd be the guy to tell you.
AL.

[tazzi]

Yes, my Neuro is at that hospital and I am a bit familiar with Dr. Strong.
I am in constant contact with the neurologist, I like her, but I seem to elude
any definitive dx so far.
Generally, my bloodwork and so forth is good, aside from bouts of mild anemia.
My GP says I'm the healthiest sick person she's seen. She says it isn't MS although
had suspicions, but she never verbalizes her thoughts so I'm not certain what
she's contemplating.
My muscles pain more and more and I seem to be able to lift less. Anyway, thanks
for the input.
Tazzi