Update on symptoms but no diagnosis

Hi all,

I posted months ago about some weird crawling sensations and arm and leg pains, shoulder, neck and lower back pain, sometimes a headache and tinnitus, balance issues, tremors (external and internal) and eye pain that started back in May.

Update - the skin crawling sensations have subsided but everything else is ongoing. Since about 3 weeks ago…I’ve also developed muscle twitching from head to toe (sometimes in my face and I even felt it in my tongue). Both of my upper arms are achy and fatigued as well. And I also have joint pain and pain in my finger tips and hands.

From a testing perspective here is what I’ve done…
I’ve had a brain, neck and spine MRI - Normal
EMG and Nerve Conduction test - Normal
ANA, HIV, all STD, all blood test - Normal
Multiple Neuro exam that have been normal
Nerve biopsy is pending

I feel like my symptoms are spot on for MS (or maybe even ALS) but my tests keep coming back normal.

My Neuro says he doesn’t believe MS (how can he say that with these symptoms…I fit almost every symptom) and I don’t have features for ALS (despite the muscle twitching).

Are there any other tests I should push for to rule our or rule in MS? Has any had an experience like this and can offer any advice? I’m all ears and beyond frustrated…I really appreciate this board and everyone that takes the time to read and/or respond.

It was a lumber puncture that eventually proved my MS
Not sure if that helps

Thank you for responding…were your brain, neck and spine MRI’s clear before you lumber puncture? Were your symptoms similar to mine?

On top of any other tests, see if you can have a blood test in case you have low vitamin D. Are you taking vitamin D and vitamin B? I had similar symptoms to you 2 years ago, plus optic neuritis. I was eventually diagnosed with MS in September.

My initial symptom was balance. I didn’t realise at the time but was also having spasms. Because I was 46 at the time they put it down to menopause but I knew it couldn’t be that. So I had a CT scan & MRI. The MRI was on my brain which showed something, I can’t remember what but neurologist said it wasn’t typical MS signs so went for lumber puncture. LP showed signs of MS. Back for another MRI on brain and spine which then confirmed MS.

Also had lots and lots blood tests. I take vitamin D now as well as Gabapentin. Think the whole process took about 3 years. I’m 48 now

What does your neurologist suggest you do now? Whatever that is, I would be inclined to take his/her advice, even if the advice is that you try to feel reassured. Even if you don’t feel reassured at all, it might be time to agree to act as if you do. For now, at least. If something else happens, then you have another go.

They did check my levels and they were all normal. Did you also have MRI’s that were initially normal? Did you also have muscle twitching?

He is saying lets wait until after the nerve biopsy and go from there. He did advise me to feel reassured that is not MS or ALS…but the muscle twitching is whats sending me down the rabbit hole. I read contradicting info on of muscle twitching is associated with MS or not…


It must be very frustrating for you. I am sorry that it is proving so hard to get satisfactory answers.

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My very first MRI only showed one lesion that was associated with the optic nerve damage (I had optic neuritis). The second one showed more lesions but this time the lesions were in the spine. Unless they have enough evidence - see MacDonald Criteria for MS) they do not diagnose MS. They do well. The twitches can be anything. I also had twitches. The twitches can be caused by other things as well, such as stress, vitamin deficiency, etc. I recall that my neurologist mentioned that a little muscle twitching can be normal even in healthy individuals, especially after exercise, during times of stress, after bad sleep, etc.

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Very…especially now that I’m down this rabbit hole of ALS and feeling like my life may be over in a couple of years :frowning:

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Thank you all for replying… I’ll keep you posted on how this progresses…

We’re going through all the tests with my husband for Ms or MND
You won’t have ALS with a normal EMG. So don’t worry about that
My husband had clear abnormalities on his EMG.
Hopefully they’ll get to bottom of it for you

your story is literally the exact same as mine in a lot of ways, message me if you like or can? not sure how to use this so don’t even know if that’s possible lol! i know how you feel :expressionless: