desperate for input

[dana1985]

My symptoms started June 8 2014. I had this weird cramping/pain episode start in my right calf and then it just went away after a few minutes. Later that night my right calf got tight and stiff and after a half hour it pasted again. The following day I went to my primary doctor who referred me to a neurologist because with my random leg pain and eye floaters he wanted to rule out MS. The neurologist did MRI's of my thoracic and cervical spine (both came back normal) and he did an EMG/NCV which also was normal. The painful episodes continued to spread.. I experienced them in my left calf, then into both of my thighs, then into my feet, ankles, knees, hips, wrists, and hands.... 90% of the time the episodes were in my legs though. They would always come on suddenly with no warning or pattern... and it would feel as though someone had broken my bones. At times I couldn't even walk or bear weight when it was occurring. And they occurred daily...some days more episodes than others.. Then they sent me to a rheumatologist who did a bunch of blood work (ANA, SED Rate, CRP, CK) all of which came back normal. They have also checked for vitamin deficiencies, thyroid disease, lyme disease, etc.. Then there was the widespread twitching.... everywhere... legs, arms, face, back, etc.... So I was sent to a second Neurologist who then said he thought it was maybe just Benign Fasciculation Syndrome and Fibromylagia. But then at the end of October the pain episodes stopped. And I didn't have any episodes all of November or December. Then early January the pain started again in my feet. Then a few days later I had this awful achy pain in my right eye only and only when I looked down. I saw an Ophthamologist who thought maybe optic neuritis and signs of MS and had me go back to check up in three days because it would have progressed in vision loss by then. But three days later it was still just the horrible achy feeling. There is also some notable color difference between the right and left eye... but she still didn't think it was ON. She ordered an MRI of my eye orbits and the results were normal. Then I went back to my primary who still thinks it could just be early stages of MS and tried me on a steroid for two days. The pain in my eye and legs were gone for the two days, but as soon as the meds left my system the pain in the eye and legs were back. I just had another round of blood work done yesterday....I'm soo afraid they're never going to find out what is wrong with me... I just want answers... but I feel like I'm losing my mind..

Please I am soo desperate for any input...

[lyndacarol]

Welcome to ThisIsMS, dana1985.

Please I am soo desperate for any input...

"Everything You Want Your Doctor to Know about Vitamin B12"

I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN, & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); 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).

[jimmylegs]

hi dana sorry to hear you are having a bad time :S do you happen to have a personal copy of your results for nutrient deficiency tests?

[dana1985]

Yes I have a copy of my test results.

Iron saturation
Standard value 15-55
My value 23

B12
Standard 211-946
My value 352

Folic acid
standard >3
My value 17

And forgot to mention I am a 29 year old female.

[jimmylegs]

thanks for these

ok they would have had a look at the b12 because deficiency is an established differential dx when working on a diagnosis of ms. HOWEVER it's not the whole nutritional picture for ms patients by any stretch.

personally i got diagnosed with ms even though i had a documented b12 deficiency in my history. my level when doing the diagnostic tests was 300 pmol/L (which is over 400 pg/ml) so they ruled it out. but, i was frantically supplementing at the time which would have messed up my results. they wanted me to wash out (stop supplementing) and retest but i was terrified and wouldn't do it. b12 had previously reversed symptoms, even though by the time i was being diagnosed it no longer seemed to work. i told the docs they could look at my history to see the b12 deficicieny, but i didn't know at that time that there was a glitch in the computer system that wouldn't chart the deficiency result because it was text, vs a number. i found out gradually, with a ton of reading, that i had an array of other nutrient problems in addition to b12.

some of the earliest info i found out was that you want to keep your serum b12 levels up higher than 500 pg/mL, so i decided i would personally aim for 500 pmol/L. i also knew perfectly well that it was no longer correcting my issues. i was given some recommended dietary restrictions for ms patients, but they made no sense to me as i had been on a lot of dietary restrictions already, and i would hear things like 'don't eat possibly inflammatory stuff like eggs or dairy' which i hadn't eaten in over a decade. i found something called the klenner protocol, which advocated a high protein diet with lots of eggs, and that made more sense in my case because it made more sense for me to be low on protein. i started looking at the nutrient supplement recommendations for ms patients and that was where things all started to make sense. i could look at dietary sources of foods that contained nutrients of concern for ms patients, and see that i wasn't eating enough of this or that food. so i radically changed my diet pretty much overnight, and when i used a simplified klenner supplement regimen along with its dietary recommendations i had the biggest single improvement in my condition that i have seen before or since. before that, i was dealing with major sensory ataxia and couldnt hold things properly, type, play guitar, anything like that. the huge difference showed me that using my common sense and choosing advice that represented a change to my status quo made the most sense, and worked. i want to emphasize that i have not seen one single nutrient protocol that only looks at b12, even though that is most often the single nutrient test (with the more recent addition of vit d3) that is done when docs are investigating for ms.

over time i found more nutrient recommendations for ms patients, info that wasn't around when the klenner protocol was developed, and also other protocols (like 'best bet') that were more up to date. when you test levels of all these things, it's tough to get a good sense of what's going on unless you have done your reading. this is because with chronic illness, test results are usually LOW NORMAL. this is what's going on with your b12 result. if you push that up above 500 you'll be in better shape for that single nutrient. but that will be only one piece of the puzzle. ms patients are low normal in all kinds of things, and what you are actually interested in in most cases, are high normal levels. if you're interested you can start testing if your diet meets basic daily recommended intakes for the kinds of supplements that are recommended for ms patients. if you google klenner4 you'll find his list. and if you google best bet supplements you'll get more. if you want to look up food sources of the nutrients provided on those lists, just google each one but add the term whfoods and it wlil point you to the relevant page on the 'world's healthiest foods' web site, and then you can see if your diet has the nutrient density needed to help protect you against ms.

hope all that helps, and if you have any questions feel free to ask

[dana1985]

Thank you for taking the time to share all of that information with me. I will definitely have to see if there are ways to adjust my diet that could help me. And my husband is obsessed with learning about vitamins and supplements and such so I'll have to get him to look into some of it more with me too.

[jimmylegs]

no problem if you have any questions feel free to ask!