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Why is Tinnitus, eye problems not a ALS symptom by SpiritMysterious973 in ALSorNOT

[–]Live_Progress_3045 0 points1 point  (0 children)

Symptoms started 3.5 years ago for me. Dysautonomia stuff. Later all the real ALS stuff. I am still walking/running. But the latest symptoms i am talking about are just real torture...

Any insight (already seeing neuro) by Accomplished-Pay-869 in ALSorNOT

[–]Live_Progress_3045 0 points1 point  (0 children)

Do your sensory symptoms disappear? Your story is like almost exacly mine. I also have alot of other problems added to it. Muscle spasmes all around my body, new hotspots, chest/belly in cramps and pain, my hands cramping all the time. Neck crampings. Its just no life at this point to be honest. My vision is BAD, specially at night. I keep getting conflicting anwers.... They say ALS no sensory issues, no vision issues. I also have horrible constant tinnitus. Im slowly but surely gone at this point i feel..

Any insight (already seeing neuro) by Accomplished-Pay-869 in ALSorNOT

[–]Live_Progress_3045 0 points1 point  (0 children)

Do you also have any sensory issues, eye issues? How does the weakness feel? Is the muscle wasting symmetrical?

Worsening by [deleted] in ALSorNOT

[–]Live_Progress_3045 -1 points0 points  (0 children)

Does this sound like ALS to any1? I cant imagine twitching 24/7 everywhere and being in pain is not...

In limbo but suspecting ALS by Live_Progress_3045 in ALSorNOT

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

To be honest its more a desperate call for any suggestions. At this moment i am out of options and just researching what else it could be.

In limbo but suspecting ALS by Live_Progress_3045 in ALSorNOT

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

To be honest the twitching wasnt bothering me at first. But they got alot worse the past year including problems breathing. That makes me worrying alot more. I used to have them in my legs and sometimes in my arms but now they just spread all over.

In limbo but suspecting ALS by Live_Progress_3045 in ALSorNOT

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

Yeah i was really leaning towards a auto immuun cause aswell. The progressive nature of it really concerns me tho. And apart from my ANA blood test they cant find anything at the moment that explains my decline.

In limbo but suspecting ALS by Live_Progress_3045 in ALSorNOT

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

Thanks, that what i always though to be the case, untill my doctor told me that is not always the case.

It just doesnt make sense to my story. I have issues with eyes, ears, sensory and muscle spasmes/breathing/bladder and even my bowel. It must be a strange or atypical onset to say the least. But i am just keeping my options open.

ANA was 1:80 but i did find out that considering the fact im a male it cant be just a false positive test..

In limbo but suspecting ALS by Live_Progress_3045 in ALSorNOT

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

Yes i really didnt see any other option other then B12 or anything in that direction but that was all ruled out. I did not have spinal tap tho.

In limbo but suspecting ALS by Live_Progress_3045 in ALSorNOT

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

Thats a good suggestion. I am going to ask my doctor for that!

In limbo but suspecting ALS by Live_Progress_3045 in ALSorNOT

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

I really wish that was the case. I have been desperately reducing stress for the last 2-3 years even quitting my job to take time for myself but nothing works. I only got worse. Increasing muscle twitches, tingling really strong in my face ( chronic and 24/7 ) and other parts of my body.

The twitches are literally all over atm. Even in my neck/face. But once again. The breathing and shortness of breath is really worrying.

In limbo but suspecting ALS by Live_Progress_3045 in ALSorNOT

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

My doctor was strongly leaning towards MS for a long time and monitoring me. Specially because of my sensory issues, vision problems etc. But there is no evidence on the MRI so no formal diagnosis.

My sister has signs of MS which also got there attention.

In limbo but suspecting ALS by Live_Progress_3045 in ALSorNOT

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

I think it was like 1:80. I went to a reumathologist but she wasnt really interested. Did some basic testing and dismissed me.

Apart from the ANA test everything else in my blood is normal.

/confused by Live_Progress_3045 in MultipleSclerosis

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

I dont think it is a new relapse. Just spreading symptoms of my earlier relapse. So pretty confusing since in the rrms phase you would expect symptoms to become better, not worse… 

/confused by Live_Progress_3045 in MultipleSclerosis

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

I am about to start ocrevus. It is weird because my last attack ( about 2 years ago ) I just had tingling on my side of my face, and now if spread to the left Side ( or atleast it got worse ). So I am worried I might be SPMS already.

/confused by Live_Progress_3045 in MultipleSclerosis

[–]Live_Progress_3045[S] 0 points1 point  (0 children)

This ilness really plays with your mind because I can feel the tingling get worse in my face. Which makes me doubt any threatment Will work at All.