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rix94

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https://www.alsforums.com/forum/do-i-have-als-als/41324-just-need-relief.html

The above thread is my original thread, which has since been closed.

Hi, I posted about two months ago with concerns that I had re: twitching and other ailments that were not indicative of anything worrisome. I saw my primary care physician, and was started on an aggressive vitamin D supplementation because I had a vitamin D score of about 17 -- which was rather low. I had also made an appointment with the Eastern Neurology and Neuromuscular Center here in Eastern North Carolina. I saw the neurologist, and my reflexes were all normal and she told me that nothing seemed wrong and to just see if the vitamin D supplement (50000 IU -- once a week) helped with the fasciculations.

I'm about three supplement pills away from being finished with the treatment, but still am twitching (generalized/body-wide) with some slight joint pain and sore areas -- but I do know that pain is not indicative of ALS so that doesn't concern me.

Therefore, I really am only here for some advice. I have a follow-up with the neurologist on Friday, and was just curious if I should pursue/request an EMG just to be certain? I have noticed I wake up with rather stiff and painful shoulders, and lower back pain, so it might be worth asking to get an MRI since it could be related to that? Not to mention neck pain and a headache that usually situates itself behind my left eye and radiates to the neck -- but I have had that for quite some time now.

Just thought I'd get an opinion from here again, since y'all were so helpful the last time. I know my age significantly lessens the risk, and that twitching alone is non-specific, but since it is still going on even after the vitamin D and multi-vitamin treatment, I just am a little concerned again.

Thanks so much,

Charles
 

lgelb

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Correcting any vitamin deficiencies doesn't translate into overnight resolution of symptoms, Charles, as I'm sure the neuro will mention if you ask.

Beyond that, what you describe sounds more like a need for a different mattress, overlay and/or pillow. Try latex -- great stuff. Get a pillow that you can unzip and add/subtract shreds to get the right position for your shoulders and neck.

You haven't presented any indication for an MRI or EMG that any doc I know would order, or any insurance company I know would approve.

Best,
Laurie
 

KimT

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With all that pain, maybe your neuro will want to do an MRI. Nothing in your post indicates ALS, so write down all your concerns and let your neuro decide.
 

rix94

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Thanks for the quick responses, Kim and Laurie. I appreciate the thoughtful responses -- when I saw the neuro about two months ago, she suggested that I let the vitamin D regimen take its course and see if it got better (which it hasn't but could mean I just need a longer treatment of vitamin D3). I'll see if they'll test my vitamin D again to see if it has improved any. However, I will do what y'all suggested (although my mattress is rather new, just got it this year). Now that I think about it, it did start after I got the new mattress and a newer pillow, so Laurie might be onto something. I'll update this thread after I see my neurologist on Friday -- thanks again.

Take care,

Charles
 

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Charles,

Your post does not suggest ALS and I suggest you let your neurologist decide if you should have an EMG.

How old are you?

You are describing morning stiffness, stiff shoulders, lower back pain and headaches. This sounds musculoskeletal to me. Be sure and mention these symptoms to your doc and ask for a sedimentation rate (sed rate) to look for systemic inflammation. If you are over 50 with these symptoms and an elevated sed rate, I would be concerned about polymyalgia rheumatica (PMR) and a related condition called temporal arteritis.

If you are a lot younger, those conditions are not likely, but you could still be dealing with a type of arthritis.
 

KarenNWendyn

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Ok, I just saw from your original post you are 23. Forget the PMR discussion. But do mention those other symptoms to the neurologist.
 

rix94

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Thanks Karen -- I'll make sure to do that. I did forget to mention in my previous post, and this one, that my mom was diagnosed with fibromyalgia -- I'll bring that up too. I should have an update by Friday afternoon!

Best,

Charles
 

lgelb

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Karen, I was assuming a sed rate was done with the earlier labs, but of course, you're right that Charles should check that.

The other thing to say, considering such a low vitamin D level to start in one so young, in a fairly sunny area, is that I trust calcium, PTH and testosterone were run, too -- and should be if not.
 

rix94

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UPDATE:

I got my lab results back that the neurologist ordered. My metabolic was perfect, except I had slightly low CO2 and fairly high ALT levels -- the ALT not being too much of a surprise. However, my ACE level was slightly high and I was told that might indicate sarcoidosis -- which is apparently a fairly rare disease? Although it says that the normal range is 9-67 U/L and mine was 69 U/L so that doesn't seem very telling. I hope I don't have that either.

My sed rate and vitamin B12 were good as well, and my vitamin D3 is now double what it was when I initially posted (it is now 34 ng/mL instead of 17 ng/mL). I tested negative for Lyme Disease and HIV. All other CBC blood work was within normal range.

The twitches are fair and few between now but still there, but as I was reassured here it is more than likely something else. I obviously will not find my answers here, but do appreciate the kindness that you all have shown me. Thank you all for your time, and for offering some concern. Take care.
 

lgelb

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Thanks for stopping back to update us, Charles. It sounds like you are on a good path, and your report will help someone else, I am confident.

Best,
Laurie
 
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