Help potentially to relieve my worries.

[generalmike23]

Ok so I have read the thing about weakness vs fatigue and it gives me hope. however first off let me tell you my mother had it, sister has had it for 10 years and my nephew(who is older than me ironically) has just been diagnosed with it two weeks ago.

So my hands have always felt like it had a constant buzz I guess. that is just sensory right? I also have experienced my right arm bicep twitching about 2 months ago and then 1 month ago my biceps have felt weird and buzzing too as well as throbbing dull pain. I can still lift 10lb weights for one set which is what I have always been able to do but when I do my bicep gets red dots in a line like its tired or muscle breakdown... is this a symptom? lastly I have the same buzz and weak feeling in my thigh and knee.

I visited my doctor and he said that he can run some muscle degradation tests, will this help determine if I have als. also my family has been told they had a defect in one of the SOM genes, will I have that same defect if I have als? He also told me that I have no atrophy in my hand, when I asked.

so in your OPINION, do you believe that these are some common(or at least experienced) symptoms of als and not something else? I still will trust my doctor to help me identify but if you can tell me its a possibility from what I described that I do or do not then I would greatly appreciate it.

also is there a sure fire way to test for it besides an actual observable weakness? like the muscle degredation test my doctor mentioned. or the SOM thing my family has and he mentioned?

 

[Nikki J]

Hi Mike
Very sorry about your family. I am FALS too. I am guessing your family is SOD1?

In my opinion only those don't sound typical onset symptoms but FALS is sneaky so if I were you I would pursue them a little. Not sure what your physician meant by muscle degradation test but I would ask for a neuro referral. I think your family history warrants it. A gene test is something you might want to consider at some point. If you are negative then your chance of ALS is about one in 1000 in your lifetime but you need to be prepared for a positive answer emotionally and practically. Do you have all the insurances you need especially life, disability and long term care. If not it might be tricky since you have had a visit for issues. A positive result would not diagnose you with ALS so you might want to get this resolved and then go with testing if you want
Good luck

 

[generalmike23]

Sadly my insurance is about to cut out(guardian parents are divorcing), here's hoping to win the lotto haha. And yeah considering I have a such a high risk for it, I was worried. Still am but I am afraid to get tested for the som1