I doubt that I have ALS, but ....

[threemonkees123]

I need to have it ruled out. I am a 43y/o female with a history of severe concussions (2). I am not sure if I should go to the VA because I am a combat vet or if I should go back to Kiaser. For those who have had experiences with the VA was it a good one? I did not have a good experience with Kiaser, but they are my insurance.

Background For the past few years I have been dealing with progressive weakness in my left hand/ arm when it is engaged in activities. It has gotten to the point I have even invested a considerable sum into a kitchaid mixer because I cannot effectively knead dough or whisk batter. I even have a hard time describing the feelings associated with what is going on, because its not numbness or tingling. The feeling of Muscle failure when you have done a crap ton of pushups would be the best description. I just know that I have to stop, rest, and try again. Typing is fine because I can rest my arms. For the past few years I have thought that it was shoulder repetitive use injury, within the last month I have noticed that in between my pointer fingers and thumbs a depression has developed.

Googling that's what led me here. I know I should not have done that but deeper on my left than on my right. Also, the clavicular head of my sternocleidomastoid muscle has disappeared on my left side. (I was a surgical tech in the military, so please forgive for using some correct anatomical terms, I apologize in advance) Now some atrophy is a normal part of aging. The only other symptom that I have is severe calf cramps at night in my legs. But that could be due do my platelet disorder which I was Dx'ed with last year.

So, any advice on getting doctors to listen. Some of the same things to dx ALS/PLS are used for nerve damage, so it would be beneficial in that regard too. Feel free to post any advice or ask me any questions. Thank you so much for any advice.

 

[Nikki J]

Have you been to Kaiser for this yet? If so what happened? Whether the VA might be better at this stsge is hard to say as VAs do vary. If , heaven forbid, you ever get an ALS diagnosis the VA will take amazing care of you with services and financial support.

this could be many things and since it is basically one limb affected hopefully it is a locslized and treatable process.

if you haven’t been seen you need to be. If you have what were you told/ what tests/ results?

 

[threemonkees123]

Okay this is where I am going to sound like a total hypochondriac. Because last year was a pretty eventful medical year. I developed occular migraines which at the time were pretty scary because I had never experienced anything like them. I didnot go to the doc when they started until I had a "thunderclap headache".

Then, I was dx'ed with my platelet disorder in Sept last year, I told my hematologist about the problem with my shoulder and its problems thinking I should tell him because I could be developing myelofibrosis. I told him about originally thinking it was a RUI then since that Dx with essential thrombocythemia that it was part of that. He said no, my form of ET is fairly benign (true for thrombosis but progression to myelofibrosis is common for my type, apparently I was supposed to have a BMB for staging according to the WHO protocol but that's for another time). He said its sounds like a muscle wasting problem and sent me for blood work and to a rheumatologist because I had a positive ANA, equivocal double stranded antibody test and a slightly positive test for scleroderma, SCL-70. none of those things fit no dx.

I completely agreed with that even though its hard to not know what is wrong told her too that I thought my shoulder/arm was a RUI. But but got referred to the neuro for myasthenia gravis because of the I have droopy eyelids and the muscle weakness. She looked at me had me do some type of duck flappy movement and checked my reflexes and told me I had an FND. The arm was not as bad back then. No other testing. I do not wish to go back to that neurologist because I told her about the concussions from 19yrs ago specifying that there that old and she said see nothing wrong with your neurologically a clear CT.

 

[KarenNWendyn]

You have number of things going on at once. If I understand correctly, high platelets, headaches, droopy eyelids, and some sort of weakness in your left upper extremity. And some nonspecific serologic tests.

I think you need to start over with another neurologist. It’s hard to say what’s going on, but you need a thorough and careful neurologic exam at the very least.

 

[threemonkees123]

My droopy eyelids are genetic. Every female ion my mom side has them. But I was reading the hyperreflexia part of the read before posting. I nearly kicked that doc when she tested my knee on my left side. But she told me that was not real.

 

[lgelb]

It is true that being fast off the draw with the knee is not necessarily hyperreflexia, and even if it were, ALS is one of its least common causes.

 

[KimT]

I agree with Karen. I would find a new neurologist.