Update after 2 years

[hollingusa]

I had an original thread but cannot find it. This was 3rd here I was reassured until i spoke to Genetic Counselor

(Prior posts- 1st thread, 2nd thread)

Today I am only worse. My left arm is much weaker than even 2 months ago, although I think it still wouldn't be clinical

Twitching began sep of 22. It was widespread. Then because discomfort in right calf and left arm near elbow. Although my atrophy seems mild, to me it seems much more. My arm hasn't exactly lost size because what was muscle didnr disappear, but it has turned into much. If I try to flex it, my bicep bounces up and goes back down. I can hold it for a bit but it tires very easy. Similar with my right leg, it's turning to mush but if you measure it, it's same size as left. Clean emg in June which was 17 month after twitching began. I understand it's reassuring but idk what else can be happening.

I've got fasiculations eveyday 80% in the affected arm and arm. My neck id always sore now as if I'm struggling to keep my head up. My neuro still thinks this is psychosomatic. I'm in so much pain everyday. Bottom of my foot has lost padding, I over pronate in that one side, and that leg is now longer(I think it's just from my hip having less muscle?) My right hip is noticeably less muscular. I've gained about 12lbs since 2 years ago. Less muscle and more fat.

Is it possible this can be als? I am 100% certain I have atrophy and and lost strength in my right leg and left arm. It's only progressed since the start, never gotten better. I have a very slight limp when I walk now. Any thoughts? Thank you and God bless

 

[ShiftKicker]

Hey there-

So sorry you are continuing to circle back to this forum for repeated reassurance despite being cleared of ALS by your neuro. It's not really clear what you think this forum might do for you, as the info and reassurances you have received in your 3 threads prior to this one have not been sufficient. We always recommend that if someone experiences new symptoms that they return to their neuro or doctor for an exam so those changes can be assessed for and compared against baseline. Please start there, as the people can't see or examine you, nor can we seem to provide the reassurances you seek.

Please understand this forum can not be a replacement for medical attention, nor can it be used to provide long term anxiety support. After 22 posts over this past year, it is very clear we are not really providing you what you need and further posting will only continue your frustration, desire for further reassurance and provide nothing in the way of actual diagnostic help. It should be noted that repeated reassurance seeking can actually increase anxiety, like scratching an itch, and does not actually get to the source of the anxiety. Only your doctors can help you with that and your physical symptoms.

Take care, and please visit with your doctor for more appropriate support.

 

[lgelb]

It doesn't seem as if there is any basis to worry about ALS, but if you are limping and no one knows why, I'd ask for a PT referral. They can evaluate your gait and suggest a treatment plan if applicable, which might in turn lead to more understanding of a potential diagnosis or other appropriate tests.

 

[hollingusa]

Ive tried PT on 2 occasions with no improvement.

I also received my NfL results today which was done out of pocket through Labcorp. It returned a result of .98pg/ml, which i understand to be normal level. Is this also a a strong indicator or no als or does this test have room for error the same we read about some folks with clean emg's ending up with the disease?

 

[Nikki J]

It is a data point. An important one. As with anything it needs to be interpreted in conjunction with other data points. A normal emg. Apparently normal clinical exam and all this after two years of symptoms in a person not yet 40. It really is time to step away from all ALS spaces and reassess. Perhaps see a physiatrist. Reclaim your life and stay away from here and also reddit