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I am reaching out here because I want to see if anyone's had similar experiences.I was misdiagnosed 6 years ago with peripheral neuropathy. And before that pretty much told that I was crazy and should stop wearing tight pants. It started out with a burning sensation in my spine and in my right leg I felt super tired and sleepy all the time and my legs seem to give out on me out of nowhere. Then I was diagnosed with fibromyalgia. Medications that I've tried for it haven't helped.now I find that my symptoms keep changing. For a while now I've been waking up with trilogy numbness my foot in my arms from my elbow joint down feel numb it's almost like they're paralyzed. The other day I woke up and the last three toes on my foot we're completely numb they've stayed numb now I woke up today and the last three fingers on my hands are completely numb. I feel like I'm losing function of my body. I often find myself confused like the room is spinning and I just can't gather my thoughts. I get burning sensations up and down my spine in my right leg my left me wants to give out on me all the time randomly. I did have a CT scan done of my brain it came back clean they did some general blood work that came back fine. I feel like I'm going crazy. When I tell my GP about the foot and hand going numb she tells me that I need to see a neurologist and that it's not typical of fibromyalgia.I do plan on making an appointment or finding some sort of specialized neurologist ASAP. I'm curious what it was like for you before you are diagnosed did you go through any of this?how did you find the right doctors.? I've reached out to forums and my fibromyalgia groups with no luck. I've had this feeling like it's something more than fibromyalgia. Any help in May direction I'd really appreciate. as well I do currently have an internist, I see. I was getting pt for the tenderness I felt in my lower back and upper neck area to try and help with walking. like I said any help in any direction I would greatly appreciate any stories of how you got diagnosed or if you have anything similar going on I would also really appreciate. Thank you so much for your time, I know this was long and probably all over the place. Its hard for me to concentrate, and as of right now with my hand being numb I have to use voice automated programs to be able to type so I apologize if there is anything in here that doesn't sound correct.

mzr6mo3 wrote:I am reaching out here because I want to see if anyone's had similar experiences.I was misdiagnosed 6 years ago with peripheral neuropathy.And before that pretty much told that I was crazy and should stop wearing tight pants. It started out with a burning sensation in my spine and in my right leg I felt super tired and sleepy all the time and my legs seem to give out on me out of nowhere. Then I was diagnosed with fibromyalgia. Medications that I've tried for it haven't helped.now I find that my symptoms keep changing. For a while now I've been waking up with trilogy numbness my foot in my arms from my elbow joint down feel numb it's almost like they're paralyzed. The other day I woke up and the last three toes on my foot we're completely numb they've stayed numb now I woke up today and the last three fingers on my hands are completely numb. I feel like I'm losing function of my body. I often find myself confused like the room is spinning and I just can't gather my thoughts. I get burning sensations up and down my spine in my right leg my left me wants to give out on me all the time randomly. I did have a CT scan done of my brain it came back clean they did some general blood work that came back fine. I feel like I'm going crazy. When I tell my GP about the foot and hand going numb she tells me that I need to see a neurologist and that it's not typical of fibromyalgia.I do plan on making an appointment or finding some sort of specialized neurologist ASAP. I'm curious what it was like for you before you are diagnosed did you go through any of this?how did you find the right doctors.? I've reached out to forums and my fibromyalgia groups with no luck. I've had this feeling like it's something more than fibromyalgia. Any help in May direction I'd really appreciate. as well I do currently have an internist, I see. I was getting pt for the tenderness I felt in my lower back and upper neck area to try and help with walking. like I said any help in any direction I would greatly appreciate any stories of how you got diagnosed or if you have anything similar going on I would also really appreciate. Thank you so much for your time, I know this was long and probably all over the place. Its hard for me to concentrate, and as of right now with my hand being numb I have to use voice automated programs to be able to type so I apologize if there is anything in here that doesn't sound correct.

Welcome to ThisIsMS, mzr6mo3.

You are NOT crazy! In my opinion, all your symptoms (beginning 6 years ago with peripheral neuropathy, which is the most frequently listed symptom among those with a B12 deficiency) are consistent with a B12 deficiency.

This deficiency should have been the first condition ruled out by any one of your doctors – I assume this was done when you say, "they did some general bloodwork that came back fine." Please be aware that there can still be a B12 deficiency in the tissues even if there is no apparent B12 deficiency in the blood. If your GP is eager to refer you to a specialist, you might ask to see a hematologist before a neurologist.

Any person at any age can develop a B12 deficiency. Initial thorough testing should include #1 a serum B12 test, #2 a serum homocysteine test, and #3 serum (or urinary) methylmalonic acid test.

"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).

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

On page 11:

There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).
… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.

Compare your B12 test results to those recommended by the authors.

We wish you all the best; please let us know how it goes.

Thank you for your reply, I actually take b12/6 and magnesium to help my symtomps (of "fibromyalgia") reccomended by an herbalist... So I'm sure sure if that is the issue. But I will def make my internist specifically check b12 ... I know I always test low on vitamin D and I take suppliments for that as well i really appreciate you taking the time to read what I wrote as well as respond. Any help in any direction is a better one than the one I'm in which feels like a dead end :/

I meant to say so im not sure if that is the issue(sorry this voice typing thing is tricky). I will be making an apt tomorrow woth my internist forhopefully a reccomadation to a good hematologist, in my area again I really appreciate the info. I will be watching the documentary for sure.

mzr6mo3 wrote:I actually take b12/6 and magnesium to help my symtomps (of "fibromyalgia") reccomended by an herbalist... So I'm not sure if that is the issue. But I will def make my internist specifically check b12 ... I know I always test low on vitamin D and I take suppliments for that as well i really appreciate you taking the time to read what I wrote as well as respond. Any help in any direction is a better one than the one I'm in which feels like a dead end :/

Hi, mzr6mo3.

Since you have been taking a vitamin B12 supplement, the results of a serum B12 test will be skewed and unreliable. I am unsure if a serum homocysteine test and a methylmalonic acid test would also be affected – this potential problem should be discussed with your doctors. It may be that a HoloTranscobalamin (HoloTc) test would give the best assessment of your situation.

Perhaps a doctor would be willing to prescribe a trial of therapeutic B12 injections (if you see an improvement in symptoms, you can assume you have a deficiency – in the blood or in the tissues). Vitamin B12 is water-soluble; it is not toxic; any excess that your body does not need will be flushed out in urine. Unfortunately, in the US, cyanocobalamin (a.k.a. cyano B12) is the form given in doctors' offices; methylcobalamin (methyl B12) is the preferred form – it is absorbed more readily by the body. Methylcobalamin is available through a compounding pharmacy.

You have lots to discuss with your internist, and possibly a hematologist. Start by composing a list of all your symptoms (so you won't forget anything, as I would without a list); and request your own copy of any test results (again, memory can fail us).

All the best to you.

So took blood work. My internist had my stay off my vitamins to get a "true value" .... Everything is in an ok range.... She tested me for lymes disease as well negative I have an apt with a neurologist on the 30 of Jan... For a mri with contrast and without as well as some sort of nerve arm testing. She told me she was very concerned about me hopefully this is something small but I can't help to be nervous when your doctor tells you 3x when she never looks at me ever generally or repeats anything, that she's concerned.... Frankly I am too... I had some other things happen in the past weeks ... I just can't get to the neurologist fast enough

heya, careful, for many nutrients 'okay' ranges tend to include both sick (low normal) and healthy (high normal) levels. which serum nutrients did you have tested? and, did you request / were you given your own copy of your results?

I have a copy idk how to gage the numbers but I have a close friend who is a doctor and he looked over it and said I was fine... I do have to keep up on my vitamin d.... I'd have to look at the paperwork again to know what you're asking.....

And yes I'm always given copies of my results as for now she's having me write down my symptoms as they come etc...

hi again, glad you have copies fyi i am always finding myself teaching medical professionals about nutrition.

here is some research on the status of nutrition education for health professionals
http://scholar.google.ca/scholar?hl=en& ... 5&as_sdtp=
and on nutrition practice by health professionals
http://scholar.google.ca/scholar?q=phys ... _sdt=0%2C5

it's kind of bleak. meanwhile there is a lot of research on the inadequacy of commonly used normal ranges to assess health. 'normal' is stats normal, and it is widely acknowledged that these ranges are not guaranteed to be developed from populations of truly healthy individuals. hence we see both patient levels and healthy levels within the 'normal' range. one of the early examples that taught me about this problem was when i had my uric acid level tested. it came back 'normal'. it was just under 200 umol/L - well above the lower cutoff, which was 140. i later learned that my level was *exactly* spot on the ms average identified in research. by comparison healthy control levels were up closer to 300. still normal, but far higher up in the range. none of this info was explained to me by my doctor. in fact i went in and asked 'if the normal range is stats normal, a bell curve, can we assume that having a level in the middle of the range, at the peak of the bell, means that you are (a) healthy? or just that (b) your result is the most typical?' she said she didn't know. (the answer is b, of course).

i'd be quite interested to know which nutrients were tested in addition to vit d3, to see whether all the ones relevant to ms patients have been tested and whether your levels match patient-normal or healthy-normal