Here again.. Read all the stickies

[Tony292]

I have been on this forum for around 2 years, have had symptoms of MND for three now. I have read all the stickies and I'm not the typical hypochondriac with a few twitches that googled my way here.

What I have finally figured out after three years, 10 neurologists and probably more than 25 Neuro examinations to include Mayo clinic and Walter Reed is that I have a few MND symptoms 24/7 and a lot more MND symptoms when I'm sleep deprived. For example, I have over 500 pages of medical records, I can tell you that I have brisk reflexes, up going babinski signs, and leg weakness 24/7 documented by numerous doctors.

When tired from too much walking or exertion, or sleep deprived, I have in addition to the previous symptoms: contraction fasciculations, clawed left hand, 2-4 beats of clonus bilaterally, left hand tremor, cross adductor sign both thighs, brisk positive jaw jerk, Hoffman sign, abnormal EMG showing axonopathy, and more to include convergence insufficiency, diplopia, bilataral thigh and left FDI atrophy, etc. neuros simply don't know what to think including mayo, one says ALS, one PLS, and mayo says "functional movement disorder with positive babinski signs and mild suspicion of MND"
I am a mystery of sorts! I don't come here pretending to have ALS or worrying myself to death, in fact I think after three years I don't have it, but nobody can tell me what I do have, and so I wait... With many more signs of MND when tired, and so I exercise in order to wear myself out prior to every Neuro appointment... Talk about tiresome!

Has anyone here had an incredibly slow, insidious pace of disease and taken years to diagnose?

I also should mention Ive been thoroughly tested for everything in the differential especially MG, tested negative several times for both antibodies, negative for Lyme, negative or heavy metals, and pretty much everything else including ms and parkinsons.

 

[Tony292]

I should also say that my symptoms are bad enough now that despite any definitive diagnosis, I am being medically retired from the Army after 17 years of service. The VA examiner was a nurse practitioner and diagnosed me with "somatoform disorder" how f'ing hilarious is that, a nurse practitioner figures it all out in 45 minutes after the Mayo clinic and Walter Reed could not in three years!

Prior to this, I could run 25 miles a week, ruck march 12 miles in less than three hours with a 40 pound rucksack, and I had less than ten pages of medical records in my first 14 years of service, quite the opposite of a hypochondriac...

 

[Clearwater AL]

Tony, as you wrote, (after three years, 10 neurologists and probably more than 25 Neuro examinations") ... if none are in consensus of ALS I really wouldn't worry about. Apparently you EMGs point away from that. And, if they can't figure it out... I doubt anyone here can. If you're going for VA Disability... stay with civilian doctors until you get a diagnostic code that will qualify you for benefits.

PS. As you also wrote, ("Has anyone here had an incredibly slow, insidious pace of disease and taken years to diagnose?") Yes, it's called PLS and the criteria for that is 3 to 5 years of neurological exclusion and observation.
And then... after the exclusion process of many other neurological diseases.

 

[Tony292]

That's the problem, one of the ten has mentioned ALS, and a second one has mentioned PLS as a solid differential diagnosis, I know I dont have ALS (unless I am the slowest patient in history) but there seems to be a huge gap between having ALS and pretty much anything else... I wish I could get one of those neuros who view MND as somewhere along the continuim...

 

[Clearwater AL]

If one of them will give you the diagnostic code of PLS you can apply for benefits. However, the VA is now making PLS decisions on a case by case basis. A confirmed diagnosis of ALS is not questioned. Hope something comes together for you that you'll finally know.

PS. I'm 16 years (active and reserves).