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Heireg35

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Oct 27, 2018
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Learn about ALS
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Pennsylvania
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Malvern
Thank you to all of you who monitor this forum and take the time and energy to respond to all of the guests with a million questions. I truly appreciate you listening and weighing in.

It’s been a tough three months for me with lots of varying symptoms ranging from neck pain to brief low grade fevers, parathesia of my arms, hands, legs, feet and sometimes face, and now what feels like muscle weakness in my right calf and left quad after weeks of all over twitching that slowly focused in in those areas. I have back pain and buzzing sensations mostly in my lower exteneties as well.

So far, I seem to pass all clinical weakness tests (at home for things like walking on toes and heels), and with my GP, but my muscles get super shaky and unsteady with continued effort. The right calf and left quad almost feel deadened? Like I can’t activated them fully?

The only test completed so far was a cervical spine X-ray which showed some mild and some moderate degenerative changes to my neck. My dr thinks it might point to cord compression or multiple pinched nerves. I’m working on scheduling a brain and cervical spine mri ASAP, and getting an appointment with a neurologist.

Labs drawn were normal with the exception of borderline low b12, which I’ve started supplementing. Negative early on for Lyme. I’ve been on proton pump inhibitors for 14ish years and they think it contributed to by inability to absorb nutrients properly. Since they didn’t test my magnesium or vitamin d levels (and I had been D deficient years ago) I started supplementing with those as well.

Two other things to note, I was on Levaquin, prednisone and received a flu shot all within the time my symptoms began.

I am a wreck that my intense fasciculations and deadened muscle feeling in my right calf and left quad are the beginning of ALS.

I’m 35 and going completely crazy with thoughts of losing everything to this disease and I know my anxiety can’t be helping matters. It took me a week of combing this forum to finally post myself.

Does anything in here point toward ALS in your experience?
 
Pain, fevers, numbness point away from ALS. It also appears that you have not noticed muscle function failure, and I take it your doctor has not noticed weakness on neuro exam.

So based on this, you don’t have ALS. Fasciculations are common, nonspecific, and meaningless in the absence of documented weakness and failure.

Makes sense to check for vitamin deficiencies and treat these. Cervical spine mri also sounds reasonable.

So keep working with your doctors, but no need to worry about ALS.
 
Not knowing why you were on a quinolone/pred, it might be worth double-checking that you are free of whatever indications for those you had. And if you were not well when you had the flu shot, your immune system might be in overdrive right now.

Agree, nothing you have said points to ALS and you have a reasonable plan to figure out what the issue is.

Best,
Laurie
 
Thank you, both.

I woke up this morning with twitching in my shoulder that was large enough to move my whole arm. Also noticed a sore spot on my back last night before bed. I’m thinking that the pain points away from als and might be caused by the cervical spine issue?

Of course it seems when the fasiculations settle down in one area they pop up in another and it’s making my anxiety go through the roof. I’ve always been anxious and have had some legitimately awful health scenarios involving my family, so this has taken a serious toll.

While I haven’t had full muscle failure I’ve noticed it seems harder to flex my toes but I’m wondering if that could be joint or more sciatic related? I do have quite a bit of muscle soreness in both legs, mostly in the backside.

The Levaquin and prednisone were given to treat what they thought might be a very stubborn sinus infection. Normally I do a little research before blindly taking any meds but in hindsight the Pred dose was really intense and I did not respond well. I had an incredible amount of water retention and that seems to have been a trigger for the tingling/numbness. A nurse friend suggested that it may have decreases swelling enough in my neck to have allowed cord compression.

I’ll keep working with my dr but I’m glad that those of you who have weighed in don’t think my symptoms point toward ALS.

I truly appreciate your time.
 
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