After extensive testing, my neurologist is 95% sure I do not have multiple sclerosis! He believes my neurological symptoms are caused by a Vitamin B-12 Deficiency. I’ve only posted a handful of times but everyone was always welcoming and helpful. I want to repay that kindness by sharing my diagnosis. I hope it is helpful to someone else, especially those in limbo or just starting the testing process.
At one point or another, I think everyone who is worried about a possible MS diagnosis hears that a B-12 deficiency (as well as other things) can mimic MS. However, a B-12 deficiency just sounds so benign and my symptoms did not feel benign. When the doctors said “we need to rule out MS”, it was MS that I focused on. Being very honest, I was convinced it was MS.
My symptoms started last June and varied from day to day. I never knew what to expect. The one pattern I noticed was that my symptoms would intensify around my monthly cycle. I experienced the following:
- extreme fatigue (exhausting to walk from bedroom to kitchen)
- difficulty walking, had to concentrate to move my legs
- couldn’t think in a straight line/brain fog
- heat intolerance (after being cold my entire life!)
- muscle stiffness in leg(s) and sometimes arms (would keep me awake at night)
- would feel extremely hot, like a hot-flash but it would last for hours (no fever)
- tingling (it would move around day-to-day but it was everywhere from my scalp to my toes)
- arm would be numb yet it felt like I was wearing an elbow-length glove
- numbness on left side of face
- burning soles and palms
- brain felt like it was on fire during the roughest days
- internal organs felt like they were shivering, yet I was super hot on the outside
- toes felt cold and wet
- leg felt warm water running down
- random twitches
- and probably other things that I don't remember at the moment
Testing began with lots of blood tests and a brain MRI. The MRI showed lesions not consistent with MS. I then had a spinal MRI, lumbar puncture and EMG on my legs. Everything was negative, yet I was still a mess.
The important part is that my B12 level was tested at 248 pg/mL. This is within the normal range of 211-911 pg/mL. Luckily, my family doctor started me on monthly B-12 shots to help with the fatigue (not due to a diagnosed deficiency).
It was during a recent follow-up with my neuro that I learned of the B-12 diagnosis. My six month repeat brain MRI is stable. My B-12 level is up to 459 pg/mL. The neuro would like to see it between 600-800 pg/mL.
I have very gradually improved since last summer. I still have symptoms but I am hopeful that they will continue to fade away. I am continuing the monthly B-12 shots and have added a high daily oral dose. As an aside, I also started with a Vitamin D deficiency of 10. I am working on getting that up as well (last test it was up to 43).
After the B-12 diagnosis, I found a wonderful book. It’s called “Could it be B-12? An Epidemic of Misdiagnoses” by Sally M. Pacholok, RN and Jeffrey J. Stuart, DO. It is filled with great information. In particular, the authors argue that the current “normal” testing range for B-12 is set too low. They believe anything under 450 pg/mL should be considered deficient. My neurological symptoms appeared while my B-12 level tested in the current range of normal.
JerryD is a wonderful advocate, reminding everyone to know their Vitamin B-12 and Vitamin D levels. I wholeheartedly agree with him! If any of my experience sounds familiar, please consider re-checking your levels and get the exact numbers, not a vague “it’s within the normal range”.
Please know that I am not in the medical profession and I’m not associated with the above book in any way. Maybe Redwings or 22cyclist can elaborate on what I’ve tried to share in this rather long-winded post. Sorry about that!
Thank you to everyone on this site. I learned so much and your support was a great comfort! Wishing you all the best!
Anne
At one point or another, I think everyone who is worried about a possible MS diagnosis hears that a B-12 deficiency (as well as other things) can mimic MS. However, a B-12 deficiency just sounds so benign and my symptoms did not feel benign. When the doctors said “we need to rule out MS”, it was MS that I focused on. Being very honest, I was convinced it was MS.
My symptoms started last June and varied from day to day. I never knew what to expect. The one pattern I noticed was that my symptoms would intensify around my monthly cycle. I experienced the following:
- extreme fatigue (exhausting to walk from bedroom to kitchen)
- difficulty walking, had to concentrate to move my legs
- couldn’t think in a straight line/brain fog
- heat intolerance (after being cold my entire life!)
- muscle stiffness in leg(s) and sometimes arms (would keep me awake at night)
- would feel extremely hot, like a hot-flash but it would last for hours (no fever)
- tingling (it would move around day-to-day but it was everywhere from my scalp to my toes)
- arm would be numb yet it felt like I was wearing an elbow-length glove
- numbness on left side of face
- burning soles and palms
- brain felt like it was on fire during the roughest days
- internal organs felt like they were shivering, yet I was super hot on the outside
- toes felt cold and wet
- leg felt warm water running down
- random twitches
- and probably other things that I don't remember at the moment
Testing began with lots of blood tests and a brain MRI. The MRI showed lesions not consistent with MS. I then had a spinal MRI, lumbar puncture and EMG on my legs. Everything was negative, yet I was still a mess.
The important part is that my B12 level was tested at 248 pg/mL. This is within the normal range of 211-911 pg/mL. Luckily, my family doctor started me on monthly B-12 shots to help with the fatigue (not due to a diagnosed deficiency).
It was during a recent follow-up with my neuro that I learned of the B-12 diagnosis. My six month repeat brain MRI is stable. My B-12 level is up to 459 pg/mL. The neuro would like to see it between 600-800 pg/mL.
I have very gradually improved since last summer. I still have symptoms but I am hopeful that they will continue to fade away. I am continuing the monthly B-12 shots and have added a high daily oral dose. As an aside, I also started with a Vitamin D deficiency of 10. I am working on getting that up as well (last test it was up to 43).
After the B-12 diagnosis, I found a wonderful book. It’s called “Could it be B-12? An Epidemic of Misdiagnoses” by Sally M. Pacholok, RN and Jeffrey J. Stuart, DO. It is filled with great information. In particular, the authors argue that the current “normal” testing range for B-12 is set too low. They believe anything under 450 pg/mL should be considered deficient. My neurological symptoms appeared while my B-12 level tested in the current range of normal.
JerryD is a wonderful advocate, reminding everyone to know their Vitamin B-12 and Vitamin D levels. I wholeheartedly agree with him! If any of my experience sounds familiar, please consider re-checking your levels and get the exact numbers, not a vague “it’s within the normal range”.
Please know that I am not in the medical profession and I’m not associated with the above book in any way. Maybe Redwings or 22cyclist can elaborate on what I’ve tried to share in this rather long-winded post. Sorry about that!
Thank you to everyone on this site. I learned so much and your support was a great comfort! Wishing you all the best!
Anne
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