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Just after my now 18 yr old son was born I started having constant miserable symptoms. Several trips to the ER and doctors office left me with diagnosis of useless words. IBS, Stress, lack of exercise (at under 100 lbs with a gym habit and toddlers), gall stones, blah blah blah.

Fast forward nearly two decades and you can now add, shooting pain behind eyes, blurred vision, foot drop, constant tripping, loss of the ability to spell, loss of nearly 10 wpm typing, EXTREME fatigue, unexplained muscle pain, words that did not come out as intended, brain fog, general radiating pain, extreme intolerance to heat and cold, sudden shocks that feel like being mildly electrocuted, painfully swollen lymph nodes and dizzy spells including while just laying in bed, a zillion trips to pee, twitching muscles, and unexplainable leg annoyance while trying to sleep at night.

A few years ago when the tripping, lack of coordination and pain started to become more obvious to others I went to a specialist, who ordered an MRI found nothing said I didn't have MS, and come back if it gets worse.

Problem is last few years that's the "worse", I go for weeks or a month of being useless to the world and then I'm mostly better. Weak but regaining most skills. I need to lose 30lbs so I start in again with the exercise and just when I think I can add a little intensity the whole cycle starts again. This time, it was so mild I just want to curl into a ball and cry. I was doing yoga 3 times a week same routines (so as to adjust slowly) added one little bike ride and !BAM! Next day I was way too sore. The day after that I couldn't stay awake, my hands started insisting on being turned in on them selves and here I am almost a week later struggling to do simple things like drive, type and cook.

Anyone else have anything similar? Stomach on top of all the other symptoms? Exercise seems to be a trigger?

Last MRI made me feel like my eyes were going to be pulled from my head. I don't want to waste my time and be miserable with another one. Anyone find a way to avoid any of these triggers?

Feeling lost.

SunshnMonnlt wrote:I went to a specialist, who ordered an MRI found nothing said I didn't have MS, and come back if it gets worse.

Welcome to this is MS, SunshnMonnit.

First, let me comment that I had the same experience: my first neurologist ordered an MRI, found nothing, and said that I didn't have MS. HE WAS WRONG!

After 2 years and investigation that included 2 weeks of testing at the Mayo Clinic in Minnesota, my 4th neurologist diagnosed me with MS.

In all my testing, no doctor ever ordered a vitamin D blood test (the "25-hydroxy D"), which I now think should be done at the very first when a patient presents with neurological symptoms. Over 1/2 of the American population is deficient in vitamin D.

MS patients are known to be deficient/insufficient in vitamin D; and when I was finally tested last January, my vitamin D level was indeed low – 24 ng/mL.

If your vitamin D level has been tested, would you share the actual test result number with us? If you have not been tested, please ask your GP to order one. And ask for your own copy of the test results so that you have the actual numbers.

Forgive me for not answering your specific question about exercise. Every case of MS is unique; since the cause of MS is unknown, it may likely be that the trigger for a symptom/exacerbation is different for each person – for example, some people are affected by heat; others are not.

Hi,

You are having a really bad trot. Well done on trying exercise but I think yoga is obviously the way you should go. If you want to be in a different setting but get similar benefits try Pilates.

Not having obvious demylination is a good thing. As Lyndacarol suggests, you should be testing for other things. Vitamin D or B12 are obvious places to start. If you can, get a doctor to get a fasting amino acid panel done and your uric acid (not urea) levels checked. If your doctor is bold, check your plasma Q10 level.
Check also for infection. In your case, I would start with EBV but test for mycoplasmas and chlamydias as well.

You obviously have something going on so you shouldn't take "no" for an answer. You may have to shop around for a doctor.

Regards,

My vitamin D went from 12.1 in feb. of 2012 to 42.9 in the last six months. I have to take 5000 Iu a day to keep my levels up. I do not digest/absorb nutrients well(I garden but also sunburn). Knowing that I have digestive issues my doctor also checked me for B12 which was fine (I take sublingual B12) .

My mother was diagnosed with MS about the same age my symptoms got worse. She has just learned to live with it. She cycles through episodes similar to myself with very different possible triggers and more of the personality shifts, both of us have communication issues when we're having a flare up. We both seem to mostly recover between episodes. She managed to work full time (retired now). I don't see how that would be possible for me. I work from home and am eternally grateful for flexible schedule some days I need a min of 14 hours of sleep. I'm in the middle of some kind of episode now and missing my yoga, I know if I push it though I'll just set myself back a few days to a week.

I need to find a new doctor again and go back, I'm just so tired of this battle. I'm almost 40, and I am so sick of hearing the bs. At first, it was I was just stressed now it's I'm just getting older, same constant symptoms.

Nothing to forgive, I know get that everyone with MS has different symptoms triggers. I was just really hoping to find someone who had found some kind of magical pill or thingymajig to reduce/prevent flare-ups similar to mine. I feel like I'm a burden on the people in my life way to often.

The lack of diagnosis or even just taking my symptoms seriously (other than when I come in bruised or injured somehow from sudden lack cordination) is frustrating. The mental eye rolls are enough to make you want to scream.

SunshnMonnlt wrote:My vitamin D went from 12.1 in feb. of 2012 to 42.9 in the last six months. I have to take 5000 Iu a day to keep my levels up. I do not digest/absorb nutrients well(I garden but also sunburn). Knowing that I have digestive issues my doctor also checked me for B12 which was fine (I take sublingual B12) .

My mother was diagnosed with MS about the same age my symptoms got worse. She has just learned to live with it. She cycles through episodes similar to myself with very different possible triggers and more of the personality shifts, both of us have communication issues when we're having a flare up. We both seem to mostly recover between episodes. She managed to work full time (retired now). I don't see how that would be possible for me. I work from home and am eternally grateful for flexible schedule some days I need a min of 14 hours of sleep. I'm in the middle of some kind of episode now and missing my yoga, I know if I push it though I'll just set myself back a few days to a week.

I need to find a new doctor again and go back, I'm just so tired of this battle. I'm almost 40, and I am so sick of hearing the bs. At first, it was I was just stressed now it's I'm just getting older, same constant symptoms.

Nothing to forgive, I know get that everyone with MS has different symptoms triggers. I was just really hoping to find someone who had found some kind of magical pill or thingymajig to reduce/prevent flare-ups similar to mine. I feel like I'm a burden on the people in my life way to often.

The lack of diagnosis or even just taking my symptoms seriously (other than when I come in bruised or injured somehow from sudden lack cordination) is frustrating. The mental eye rolls are enough to make you want to scream.

Undoubtedly, you know that 12.1 (I assume the units are ng/mL) was extremely low – dangerously low, in my opinion (I have no medical background).

I would hope that your doctor began high-dose D supplementation immediately in 2012. And I hope that your doctor has been monitoring your level regularly (once or twice per year) ever since. Even at your current level of 42.9, you have only barely achieved the recommendation from GrassrootsHealth (http://www.GrassrootsHealth.net) that the level should be at least 40-60 ng/mL) – there are neurologists who recommend patients with neurological symptoms should maintain a level of 80-100 ng/mL.

If you find a new doctor, emphasize your past vitamin D deficiency and request regular testing.

5000 IU of vitamin D a day sounds like a lot – experts now consider that 5000 IU is needed every day by a healthy person (and is not meant to correct a deficiency); the daily physiological dose that human beings have received historically is 10,000 to 15,000 IU. Modern life has contributed to making vitamin D deficiency very common.

In fact, I even wonder if your mother has had a recent vitamin D test (the "25-hydroxy D"). Your symptoms (and her symptoms) could result from vitamin D deficiency. Vitamin D is needed by every cell, every organ, every system in the body. When the vitamin D level in the blood becomes adequate again, it takes awhile for the body's system, which has been affected by the deficiency, to heal itself; it is not a "quick fix."

SunshnMonnlt wrote:Nothing to forgive, I know get that everyone with MS has different symptoms triggers. I was just really hoping to find someone who had found some kind of magical pill or thingymajig to reduce/prevent flare-ups similar to mine. I feel like I'm a burden on the people in my life way to often.

The lack of diagnosis or even just taking my symptoms seriously (other than when I come in bruised or injured somehow from sudden lack cordination) is frustrating. The mental eye rolls are enough to make you want to scream.

I have dealt with pretty much the same stuff for over 20 years.
It is a huge fight with doctors on this sort of stuff unless you cant walk or see, then they actually look into you problems.
I suggest you go get a copy of your MRI report as often the doctor will say "nothing on MRI" when in fact that is not true.
I too am in the process of trying to get a diagnosis instead of a lot of waffling and being blow off.
Good luck and look around this forum and you'll see the vitamin D shilling is extreme here.
You deserve answers but be prepared to fight a bit to get them.