Help! Pain all over- could it be MS???

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Help! Pain all over- could it be MS???

Postby AGD » Tue Nov 29, 2016 11:01 pm

Hi,

I'm very new to this forum and I was wondering if anyone could shine some light on some symptoms I've been experiencing. I've had sharp pains all over my body since the end of middle school and I'm in college now. But recently (in the past 6-8 months), the pain has reached points where I am on the verge of tears but I rarely cry. There werected two instances in the past two months where this horrible horrible shooting pain felt like it was ripping through my hands. In the first instance, my hands were shaking and I couldn't stop them.

The pain feels like it's happening in my nerves and they are most noticeable at night when I'm just laying in bed. I consider myself a very relaxed person so I highly doubt this is stress or anxiety. Family members have been saying it's one of the two but hearing that only makes me livid; I know my body when it's stressed or anxious and these symptoms are completely unrelated to either of those.

I do also get a lot of headaches and that's been happening for years.

On a somewhat related note: I have glaucoma, it runs in my family and I was diagnosed my freshman year of high school. The two ophthalmologists I've had both mentioned how it's weirdly localized to my right eye only though. My current opthamologist referred me to a optha-neurologist but they are extremely unattainable. But it is possible that my glaucoma could be optic neuritis, they both result from damaged nerves and optic neuritis I heard is usually in one eye.

Also, I've told many doctors about my symptoms but got no answers. Although, I have twice been tested ANA positive (titter- speckled, 1:160), all my other blood tests came normal (I don't have diabetes nor lyme). I have an appointment to see a rheumatologist soon, I just would REALLY like to know if anyone has similar symptoms or thoughts to share. Anything remotely close would help!

Here are my full list of symptoms. All of these, I've had for years but the pain is the most alarming to me and absolutely the most frustrating.

[ ] Sharp and stinging random pain (feels like a variation of a bee sting)

[ ] Sometimes pulsating pain

[ ] Pain in elbows, chest, legs, arms, knees, toes fingers, bottom of feet, palms, wrists, joints, back, face

[ ] Muscle spasms (especially at night)

[ ] Fatigue (I get 8+ hours a night and I try to nap when I don't have classes but I always feel so tired. And yes, I take vitamins daily)

[ ] Weakness

[ ] Difficulty walking up stairs

[ ] Difficulty walking

[ ] Difficulty holding phone or laptop

[ ] Difficulty lifting backpack; hands and fingers go numb and get tingly when I carry it

[ ] Tingling

[ ] Burning sensation in my feet

[ ] One food hot, the other very cold

[ ] Can't stand for long from time to time

[ ] Arthritis in family, plus I have stiff joints

[ ] Heartburn

[ ] Get imbalanced so often

I'm thinking it could be MS or lupus
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Re: Help! Pain all over- could it be MS???

Postby NHE » Wed Nov 30, 2016 12:30 am

Welcome to ThisIsMS. What tests have you had done so far, e.g., vitamin D, vitamin B12, Lyme disease, etc? What have your doctors said regarding your symptoms? What type of diet do you follow, e.g., vegetarian, omnivore, SAD, etc?
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Re: Help! Pain all over- could it be MS???

Postby Scott1 » Wed Nov 30, 2016 1:22 am

Hi,

I agree with NHE's line of questioning. It will be very important for you to build the clearest possible picture of how you really are. Doctors often go for a standard battery of tests and yell you that's all there is.

If you can share the actual test results with us that will help us see what you have been told.

Regards,
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Re: Help! Pain all over- could it be MS???

Postby lyndacarol » Wed Nov 30, 2016 8:07 am

Welcome to ThisIsMS, AGD.

I join the others here in suggesting that you begin with basic blood tests. Since you are in college, perhaps some of these could be obtained through your college health center. Or, if you have a family doctor, ask him for these initial blood tests, which are reasonably priced compared to neurological testing, like MRIs. (Or even asked the rheumatologist that you have an appointment with.)

(1) Ask for the vitamin D test called "25-Hydroxy D" – this is not part of any standard panel and must be specifically requested
(2) thorough vitamin B12 testing should include 4 tests: the serum B12 test, the RBC (red blood cell) folate test, the serum homocysteine test, and the methylmalonic acid test
(3) other nutrient testing should include a magnesium test (some say the RBC magnesium test gives a more accurate evaluation of the body's magnesium level than the serum magnesium test) and a zinc test

Although you take vitamins daily, if you have had a long-term nutrient deficiency (which seems possible to me, since your "sharp pains" began in middle school), standard vitamin dosages will not correct a deficiency.

By the way, ask for your own copy of any test results. It is important to have the actual numbers. It is not adequate simply to hear "normal." For example, your vitamin D level should be at least 40-60 ng/mL.

Your symptoms are common to many conditions, which must be ruled out before an MS diagnosis can be considered (There are tests for these other conditions; there is NO definitive test for MS.)

Misdiagnosed Vitamin D Deficiency (9 min.)
with James E. Dowd, MD, FACR, ABIHM:
https://www.youtube.com/watch?v=aeLz5cBKJ3I

Interviewer: Because of what you said where a lot of doctors still aren't seeing this as a need to get tested for, vitamin D deficiency is probably still misdiagnosed as a number of other things… Is that correct?
Dowd: Yes, it probably is overlooked in a number of different diseases. Chronic pain, something that's rising significantly in the United States right now. There was a study that was done looking at chronic pain and they found that patients who had low vitamin D levels, below normal, were using twice as much pain medication as the patients in the pain clinic who had normal vitamin D levels. So there's a correlation there with how much pain you experience among patients with chronic pain.
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Re: Help! Pain all over- could it be MS???

Postby elaine747 » Mon Oct 08, 2018 8:45 am

That's the first time I've seen the necessary Vitamin D test referred to as 25-Hydroxy D.
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Re: Help! Pain all over- could it be MS???

Postby jimmylegs » Mon Oct 08, 2018 8:48 am

the learning curve is the silver lining. and the docs know - nowadays. mine didn't in 2006. i had to teach both her and the naturopath. they both argued that we should test 1,25 dihydroxyvitamin d3.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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