14 Months of Tests...Diagnosis?!?

[Twinsmom]

Hi everyone!
Well, we are finishing up a 4 day stay at the Washington, DC VAMC "WRIISC" (War Related Illness & Injury Study Center). In Melodyland, we were going to leave here with a very clear diagnosis of some treatable condition that was caused by some "THING" from his military service (vaccines, exposures, whatever)... - and be able to officially close the door on "possible ALS"

The great news is that everyone we met was incredibly receptive and appeared to be at the top of their game. My husband was giving all the doctors their own "House" character. Our neurologist was House, his neuropsychologist was Cameron (we had 2 Cameron's...his environmental exposures specialist too!), his chief neurology resident was 13 (yep, smart and sexy!)and the senior neuro resident was 'Taub'...I'm digressing...anyway, they were very thorough. EMG/NCT, MRI of neck, spine and Head, Sleep Study, neuropsych testing, LP, blood tests, labs, blah blah blah...

Telling his story OVER EVERY TIME A NEW PERSON JOINED THE TEAM...got a bit tedious, but what else did we have to do, right!? :roll:

Long, frustrating story short...Still in the "Motor neuron disease" bucket...The GOOD NEWS...he's not progressing at the same rate 'typical' of ALS (thank you God) There is denervation, but in only 2 sites tested. There is noticeable UMN symptoms, but again...still very functional. Can't stand from a squatting position, his walk is a bit stiffer/slower now, cramps upon exertion of any of his major muscles (legs, arms, back, etc)

They are now throwing out the idea of PLS, which actually could fit, EXCEPT...he doesn't have spasticity (anywhere). Weakness - yes; Cramps - yes; His right leg and arm seem weaker than his left and is now a bit smaller than his left(this is his dominant side and USED to be stronger/larger) but not horrible...

So, my forum family experts- has anyone heard of PLS where spasticity is NOT present? A wise man on this very forum often says "It's not ALS until it can't be anything BUT ALS"...so we continue to question and seek...
Look forward to your insights!
Peace,

Melody

 

[trfogey]

Melody,

Did the doctors say no spasticity, or is that your and your husband's observation? What laypeople call spasticity and what doctors call spasticity sometimes turn out to be different things, especially in the early stages. Much like measuring clinical weakness, sometimes only a hands-on exam will catch the earliest stages of spasticity.

 

[Twinsmom]

They aren't labeling it yet, but the neurologist did say he noticed difficulty releasing his muscle once contracted or tightened. We won't get the final report for a couple of weeks...