Could this be MS? I am scared

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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sanabo
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Could this be MS? I am scared

Post by sanabo »

I have had the following symptoms for 2 months now: Tingly/Numbness in limbs, face, brain; Muscle Tightness; Limbs Falling Asleep At Night; Eyelid Twitches; occasional muscle twitching; occasional burning.

In addition, in the last couple of days I have had lower back tightness, but that may be due to sit-ups from a recent workout. And my legs have felt heavy and awkward - it's kinda hard to explain exactly how it feels, it is just weird and feels gross. I had a massage recently and it felt as though my muscles weren't feeling the touch of the therapist like normal. It felt diminished; hard to explain really, but just off. I can move normally for now, but I always feel tingly somewhere and my legs and biceps fluctuate from feeling tight to feeling weak to heavy. I still workout, so that could be a factor but in the past it hasn't really because I workout regularly.

I have not had an MRI yet, just a CT that was normal. I am in process of getting an MRI on brain/spine.
I have had blood work done and those all check out fine for what was investigated. Haven't checked Vitamin D or any other vitamins/minerals besides B12, which was normal. Any other things I could have checked that might be causing this?

I am terrified that this is MS or another neurodegenerative disease. I just don't feel right anymore. I have some days here and there that I feel "better" but have not had one where I am symptom free since early January. Ibuprofen helps a little, but I know that isn't a solution if there is one. My initial physical exam with neuroloigist went well and he said that I am not showing signs of MS or ALS "at this time", but this sure does not feel like it is going away.

Any feedback on what is happening, I would be grateful. I just NEED to know what is going on. The not knowing is killing me.
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jimmylegs
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Re: Could this be MS? I am scared

Post by jimmylegs »

hi sanabo and welcome to TiMS. understandably a very very scary time.
sadly, there are no super quick answers but what you can do is continue as you have started and work on getting answers.

keep working on getting the tests, dig in on understanding the results.
could we inquire what the 'normal' b12 result was (including the units of measure?). i was b12 deficient before dx, so was obsessed with it for a while. some 'normal' results are more reassuring than others!

do everything possible to optimize self care within your current circumstances. make sure the docs are only seeing and working with disease process, not the consequence of some suboptimal nutritional scenario.
it's complex, multifactorial stuff - would you consider posting a bit more info about your background, any other family or personal health issues, seemingly-minor health quirks, and/or how you go about looking after yourself in general?
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sanabo
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Re: Could this be MS? I am scared

Post by sanabo »

Hi jimmylegs,

Thank you for responding. I am in my early 40s and I workout 3-4 a week. Eat well, enjoy sweets, but nothing excessive. No MS in my family. My grandfather had Alzheimer's but no other neurological diseases that I know of in extended family.

My B12 was 682 pg/mL two months ago. I have been taking alpha lipoic acid right now which was approved by my neurologist. In addition, I take fish oil and vitamin C.
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jimmylegs
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Re: Could this be MS? I am scared

Post by jimmylegs »

ok so your b12 is definitely not in the questionable section of the normal range. fish oil and vitamin C, also good. i don't know enough about ala to comment.

vitamin d3 status would be the next one to test, for which you could expect to have ready buy in from the doc.
as with b12, you don't want to be too low in the normal range. there's a sweet spot you want to aim for, but we can get into that (and any potential cofactor considerations) once you have a result in hand! i recently read where physical activity can help boost d3 levels, so the workout routine might be helping there along with all the other known benefits! :)
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sanabo
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Re: Could this be MS? I am scared

Post by sanabo »

So my Vitamin D is low at 26 ng/dL and is in the borderline range, so I don't think my problems are dietary. Every other vitamin is normal.

Here is one thing I have noticed recently: after running for 15 minutes, the parathesia gets immediately worse. After a week of feeling better (mild feet tingles) I ran. All limbs, face, brain became pins nd needles and I had the awful night time dead limbs feelings again.

Is this a sign? Does exercise, and particularly running, make things worse?
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Scott1
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Re: Could this be MS? I am scared

Post by Scott1 »

Hi,
If you exercise, and it raises your temperature, you can get a symptom called Uhthoffs sign. Before you jump to any conclusions, it can be caused by about a dozen different reasons and does not, by itself, imply anything. It's a transitory syndrome that disappears as your body cools down. Nonetheless, its a good thing to have your MRI to eliminate the chance that MS is an issue. If the MRI finds nothing, you can still say "what about this symptom"? That can prompt another line of investigation.
Regards
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NHE
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Re: Could this be MS? I am scared

Post by NHE »

Hi Sanabo,
Welcome to ThisIsMS.
sanabo wrote: Fri Mar 12, 2021 9:30 amI have been taking alpha lipoic acid right now which was approved by my neurologist. In addition, I take fish oil and vitamin C.
I also take lipoic acid. The form I use is the sodium salt of the R isomer, i.e., Na-R-Lipoate. I have posted several articles discussing lipoic acid in the Natural Approach forum.

search.php?keywords=lipoic&terms=all&au ... mit=Search
sanabo
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Re: Could this be MS? I am scared

Post by sanabo »

I get my MRI results today. I am so terrified. She wants to do them over the phone, but with the bloodwork and CT the secretary just told me they were normal, so this has me freaking out. I guess maybe if it was something bad she would have wanted an in person too? So maybe it will be ok. I'll let you know. Prayers and good vibes, please!
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jimmylegs
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Re: Could this be MS? I am scared

Post by jimmylegs »

how did it go @sanabo ?
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