MS isnt painful? My first post and need some answers.

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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Njoy704
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MS isnt painful? My first post and need some answers.

Post by Njoy704 »

Hello. I joined this forum because my hubby and friend both believe I could have MS. I've always believed my weird symptoms are due to fibromyalgia since I read the big difference between fibromyalgia and MS was that MS isn't very painful. I feel pain. My ankle and ribcage sometimes feel like they're broken, I have joint pain in my hands and feet. They feel swollen , but aren't swollen. I have headaches and a burning sensation on my temples. Pain in my jaw, muscle ache, eye pain. What has my husband and friend believing that it could be MS instead are ... I sometimes get these shock sensations at the side of my head. Almost like someone snapped a rubber band in in my head. I get the feeling like someone splattered cold water on my skin. Feeling of cold water dripping on my skin. Creepy crawly feeling on my scalp. Brain fog where I can't complete my sentences. And lately my vision when reading something like a magazine or book has gotten blurry/double vision, but I'be always been near sighted. And my leg and arm muscles twitch and contract like crazy. They don't hurt, but when they twitch you can see it moving. I get burning sensations and also feel worse after a hot bath or shower. Almost like I'm exhausted and faint, and it makes my muscles and joints hurt more instead of making it feel better. And in just the past few days, I'very been getting a vibrating sensation at the top of my left breast. So... I'm wondering if these are signs of MS? I had a physical exam and mentioned these to my doctor. He tested for vitamin defiency including b12 and vitamin d. My b12 was normal.... but, my vitamin D was low. My friend said that there is a strong link with vitamin D defiency and MS, so now I'm thinking all this time I could have MS. I also had a Lyme test which was negative, so Lyme has been ruled out.

I had a brain and c spine MRI without contrast 8 months ago for my headache. Brain was normal and c spine showed mild bulge. No lesions noted. Would I need a contrast study to show lesions? Or does a clear MRI mean I don't have MS? And if I were to do another MRI, should I wait until I have a lot of the symptoms? Will lesions show if youre asymptomatic?
Thank you for taking the time to read. I hope I can get some replies.
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NHE
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Re: MS isnt painful? My first post and need some answers.

Post by NHE »

Welcome to ThisIsMS.
Njoy704 wrote:Hello. I joined this forum because my hubby and friend both believe I could have MS. I've always believed my weird symptoms are due to fibromyalgia since I read the big difference between fibromyalgia and MS was that MS isn't very painful. I feel pain.
It is a myth that MS doesn't involve pain. It is unfortunate that this myth still persists.
I had a physical exam and mentioned these to my doctor. He tested for vitamin defiency including b12 and vitamin d. My b12 was normal.... but, my vitamin D was low.
Do you know what your B12 test results were? The low end of the standard range for B12 is set much too low and includes a lot of people who are actually deficient. The standard range for B12 is usually around 200-800 pg/mL. However, anything less than 500 pg/mL is suspect especially in someone experiencing neurological symptoms. Moreover, a simple B12 test is inadequate to evaluate your body's B12 status. To get a better picture of how your body is processing B12, you really need to get homocysteine, methylmalonic acid (MMA) and red blood cell (RBC) folate checked as well. Homocysteine and MMA are two metabolites that can be elevated if B12 is low. In addition, if you're low on folate, then used B12 cannot be recycled back to the active methylcobalamin form and a folate deficiency can drive down B12 levels over time.
I had a brain and c spine MRI without contrast 8 months ago for my headache. Brain was normal and c spine showed mild bulge. No lesions noted. Would I need a contrast study to show lesions?
No. The gadolinium contrast agent is used to distinguish lesions with active inflammation from inactive ones. The lesions would still show without the contrast.
Will lesions show if you're asymptomatic?
Yes, MS lesions come and go. The brain has plasticity and can often compensate for the damage from a lesion especially early in the disease. People with MS often have lesions without having clinical symptoms.
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lyndacarol
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Re: MS isnt painful? My first post and need some answers.

Post by lyndacarol »

Welcome to ThisIsMS, Njoy704. Your symptoms are consistent with many conditions.



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

I recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their new book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).


@1:23 "The neurological manifestations well precede the hematological manifestations."
@1:46 "The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."
@4:50 Pacholok says, "MS is a demyelinating disease and so is B12 deficiency. You can't tell the two apart unless you test for that."

As NHE has said, the "serum B12" test alone is not always adequate to detect a deficiency. Taking vitamin B supplements before testing can even skew those results more so. If available in your area, the newer, more reliable HoloTc test is preferable.

In addition, the serum homocysteine test, the folate test, and the methylmalonic acid test should be ordered. Request your own copies of any test results – the actual numbers are more useful than hearing "normal."

As for your muscles and joints hurting more after a hot bath… Soaking in an Epsom salt bath for at least 20 minutes a couple times per week seems to help some people.
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