Is this FALS/FTD

[Ed212]

Hey, my maternal grandmother passed from als. Over the last year and a half I've had progressively worse neurological symptoms that they haven't been able to diagnose. It started with sudden attack of vertigo and convergence insufficiency on the subway. The dizziness and double vision have slowly improved but are not gone. This proceeded to months of profound fatigue where I was diagnosed with CFS. Suddenly, my fatigue decreased greatly but then I began to get fasiculations all over my body. Ive always had tendonitis in my forearms but that grew far worse until now it's getting hard to type or do dishes etc. Not impossible, not dropping things but very achy and weak. At some point my hands just sort of stop having any strength and I have to stop. My hands are extremely atrophied and bony. My legs also feel quite weak at times and at others seem OK. Through all of it, I've had memory and word finding problems. A few times I couldn't remember the name of the person I was talking to and once or twice where I was. The muscular deterioration is bi-lateral. I've been tested for lyme twice with the western blot and both times was 100% negative. At the present time they are treating me for lyme anyway but it's not doing a whole lot. I've also tested positive for an active mycoplasma infection. I would just say it was Lyme but even my Lyme doc looked at my hands and said "that could be als." I know if it's als it would be very atypical but with the family history I'm starting to get worried. Thoughts…? Is it time to visit an als clinic?

 

[Ed212]

I should add I had an emg last year and a few months ago only right arm and it was clean. I've also had full mris and three MS docs ruled out ms.

 

[Atsugi]

maternal grandmother passed from als <> Sorry to hear this. Be reassured that a single relative with ALS does not worsen your odds.

vertigo and convergence insufficiency <> not ALS
months of profound fatigue <> not necessarily ALS
fasiculations all over my body <> All over? Not necessarily ALS
tendonitis in my forearms...achy and weak <> not ALS
hands stop having any strength <> but then, they come back OK. ALS doesn't get better, ever.

hands are extremely atrophied and bony <> very concerning.
legs also feel quite weak at times <> "feeling" weak doesn't count.
memory and word finding problems <> common to healthy people
couldn't remember the name of the person <> very common
muscular deterioration is bi-lateral <> not like ALS
active mycoplasma infection <> nothing to do with ALS
doc looked at my hands and said "that could be als." <> seems pretty irresponsible of a doctor to say "you might be dying" before they have a diagnosis.

emg last year and a few months ago only right arm and it was clean <> That's pretty much your answer about ALS.

Is it time to visit an als clinic? <> No.

Do you have a GP PCP to lead your health investigations?
Maybe get another GP involved, so you can get a handle on those hands.
I don't see any reason to be worried about ALS.

 

[Nikki J]

Hi
It is true one relative does not FALS make.
However if you have atrophy detected by an MD then it needs to be investigated. Starting with a pcp who can see the big picture is a great idea. It sounds as if possibly you have been seeing doctors with a too narrow focus ( ms doctors, Lyme doctor -please tell me not LLMD!). Start with a pcp who may refer you to a general neurologist. Drilling down too fast can be counterproductive as the very specialized doctors can sometimes just rule out their disease and leave you hanging which sounds like what is happening