HealthCareMagic is now Ask A Doctor - 24x7 | https://www.askadoctor24x7.com

question-icon

Suggest Treatment For Idiopathic Peripheral Neuropathy

default
Posted on Tue, 2 Aug 2016
Question: Is there anyway to determine if b12 is getting into muscle and nerve cells. My blood b12 level is extreme. 3500 with an 350 to 950 normal range. i cannot find a diagnosis after 9 neurologists including a week at mayo clinic. Idiopathic peripheral neuropathy is only diagnosis. I feel great except have loss all use of legs and now losing loss of muscle in arms slowly since 1999.

only test that is abnormal is b12........whole exome sequence 1 yer ago was negitive for gene issues
doctor
Answered by Dr. Dariush Saghafi (2 hours later)
Brief Answer:
B12 in clearly going to enter your muscles

Detailed Answer:
Good afternoon and thank you for your question on this network.

Since B12 is a water soluble vitamin then, there is no doubt it is definitely penetrating into the muscles throughout your body. If your serum level is 3500 then, I would recommend bringing those levels down to a more reasonable level such as 1000 IF the elevated level is clearly due to your ingesting or getting injected with MEGA doses of B12.

If you are only taking moderate to moderately high doses of B12 for the purpose of trying to "strengthen" yourself or have increased stamina then, I would ask your doctors if they've made sure that you don't have any of the following problems:

Solid neoplasms, myeloproliferative blood disorders, liver metastases, liver diseases and kidney failure which are all pathologies that one should think of in the face of extremely elevated blood levels of Vitamin B12 (hypercobalaminemia).

If you definitely do not have any of those types of disorders then, there really isn't any truly awful things that can happen when B12 is very high. At least no upper limit or formal toxicities for B12 are known to occur in practice.

One assay that can be done also when levels in serum are this high are what are called the TRANSCOBALAMINS. Also, as crazy as this may sound....people can have ridiculously high serum levels of B12 (such as in your case) and STILL BE B12 deficient. I don't know if anyone would think to check both your methylmalonic acid as well as your HOMOCYSTEINE in both serum and urine to see if they are ELEVATED.....because then, your system may actually be running a deficiency INSIDE the cells such as the muscle and brain. This should be checked out.

Here is what I use as a COMPLETE PROFILE for laboratory workup when faced with challenging NEUROPATHY cases.

Random glucose, glucose tolerance test and HbA1C, folate, vitamin E (Total and FREE), cryoglobulins, hepatitis profile, (ANA), (ENA), and sulfatide levels
â—¦Creatinine, BUN, FT4, TSH, Microsomal enzyme serum assay, Total T3, FT3, Antithyrogloblobulin Ab, Thyroglobulin Ag, Liver function tests, Serum protein electrophoresis (SPEP) or serum immunofixation, Urine protein electrophoresis (UPEP), anti-MAG antibodies, Total and FREE testosterone levels, Total Vitamin D, Vitamin D2 and D3 assays, Rheumatoid Factor, cold agglutinins, ESR, and CRP?

I also have an entire 2nd XXXXXXX of tests if the above are negative and then, there are imaging studies for your condition as well as QST (qualitative sensory testing) and QSART (quantitative sudomotor axonal reflex testing).
If I've satisfactorily addressed your question then, could you do me the kindest of favors by CLOSING THIS QUERY and be sure to include some fine words of feedback and a 5 STAR rating to our transaction if you feel the response has helped you? Again, many thanks for posing your question.

How about genetic testing, muscle and nerve biopsies? Have those been accomplished and sent out?

If I've satisfactorily addressed your question then, could you do me the kindest of favors by CLOSING THIS QUERY and be sure to include some fine words of feedback and a 5 STAR rating to our transaction if you feel the response has helped you? Again, many thanks for posing your question.

Do not forget to recontact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this topic or others.

This query has utilized a total of 41 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
default
Follow up: Dr. Dariush Saghafi (24 hours later)
Thank you. i will be following up on each item.

my issue started in 1999 with a funny sensation ( numbness?) in two toes. AT that time i was a very healthy 54 year old soccer referee and outdoors backpacker. Three healthy children. lots exercise and ate healthy
. In 2006 i went to the first neurologist because my feet were feeling funny and i could not run as fast as I needed to to keep up with U19 boys.
He did all the needles and pins tests and some bloodwork and said idiopathic perpherial neuropathy. no known help.
i have no pain, I feel good still, just have no muscles in legs and muscles loss in arms. 8 other neurologists, chiropractors, internal Med, naturalpathotahs, buyt no one knows cause. wish you practiced around here. Maybe I will come to Cleveland?

Sorry I take no B12 supplements. Eat very little red meat but do eat some fish and chicken along with much vegetables. no sugars and little bread.

one more comment yes a sural nerve and muscle (calf) biopsy was performed. UTSW pathologists and mayo Pathologist reviewed and indicated some type of issue was there but apparently it did not fit anything they could identify. I also had a whole exome sequence performed by Gene Dx but only a couple of item showed up and geneticists at GeneDx, UTSW and Baylor did not see any relationship that would explain my condition. thanks
doctor
Answered by Dr. Dariush Saghafi (17 hours later)
Brief Answer:
I am currently a 56 year old wrestler (collegiate/freestyle/greco Roman)

Detailed Answer:
Well, it's nice to meet a colleague (of sorts). I'm also an assistant coach for the local university Div III (JOHN CAROLL) varsity mens wrestling team (Title 9 hasn't forced us to put up a womens' team just yet! LOL. And I continue to compete at the collegiate Open Tournament levels....I've still got my legs, my arms, my knees, my back, and my neck. I've lost my speed, agility, and to lose weight....let's not even go there! But it's great fun and excitement and puts a lot of responsibility on the kids' shoulders to not complain about ANYTHING we have them do in practice since I'm going on there on stepping on that stripe myself! HA!

We get a lot of our boys up on the wrestling team who are dual soccer players and they are always so disappointed to find that just because they finished a season of soccer doesn't make them conditioned immediately to wrestle!

At any rate, though I'd love to tell you that a trip to XXXXXXX could solve all your problems but I know that would be a bit of a commitment that I wouldn't want to make since you've already been seen by 8 neurologists and had a pathology team look at things from Baylor and UTSW no less (big boys). Of course, I don't want to sell my colleagues here at XXXXXXX Clinic or University Hospitals/Case Western Medical Center short either since there are some world famous folks that work in the areas of peripheral neuropathy which is at least part of your problem according to the diagnosis.....but it's more than that....it's muscle loss and weakness and that starts trending into the areas of a muscular dystrophy of some type. And so, were any of the 8 neurologists NEUROMUSCULAR SPECIALISTS and did they say you had any of the features of one of those types of illnesses. What did your EMG show? Has inclusion body myositis been ruled out completely from this picture?

I think it is VERY ODD and clearly needs to be evaluated on its own why you should have a serum level of 3500 for your B12 and NOT BE ON SUPPLEMENTS. That to me is remarkable and I've already provided at least a short list of possible things to look at in case they have not made mention of that aspect of things.

Again, I would not want to be the one to deter you to visit our fair city...which I think is pretty awesome now that the RNC is in town (DO NOT COME NOW!) and we've got LEBRON JAMES! :) but I'm sure you've got resources to get a leg up (no pun intended) on the issue of why your Vit. B12 is so dog gone high....in fact, I've never even seen a level THAT high on anybody yet in my years of practice...not EVEN in VITAMIN FREAKS (and you know I hang out with some of those in the gyms) on mega dose supplements have I seen levels like that.

I was GOING to go down the road of genetics testing and interpretation by a geneticist but someone already stole that thunder......but I still think that B12 level needs to be looked at in more detail...there could be some nuggets of gold in there that could help piece the puzzle a bit more. And I'm sure they've dug into your family history more than you ever wanted...(or knew they could! HA!). But is there anybody in the family with ANY types of disorders, neurological or otherwise that were a little odd, or otherwise couldn't be adequately explained except by just putting it off to age, or lifestyle, or something nebulous that needed no further inquiry or explanation?

P.S. We lived in XXXXXXX and my younger brother was born in Temple at XXXXXXX and White Memorial where my father did his surgical training. I remember getting my tonsils out there at that hospital when it was QUITE A BIT SMALLER than it is today...and I remember getting my first GINORMOUS RED TEXACO FIRE CHIEF helmet as a gift with a radio device in the helmet that sounded like I was talking to XXXXXXX Control or something! Oh, and let's not forget the LIONEL TRAIN SET that came in that year as well......then, we moved out....My mother did not miss the RED ANTS of the backyard at all!! CHEERS!

If I've satisfactorily addressed your question then, could you do me the kindest of favors by CLOSING THIS QUERY and be sure to include some fine words of feedback and a 5 STAR rating to our transaction if you feel the response has helped you? Again, many thanks for posing your question.

I'd love to hear what may come about from any further testing or evaluation of your B12 levels so don't forget my address on this network of: www.bit.ly/drdariushsaghafi

This query has utilized a total of 72 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
Answered by
Dr.
Dr. Dariush Saghafi

Neurologist

Practicing since :1988

Answered : 2473 Questions

premium_optimized

The User accepted the expert's answer

Share on

Get personalised answers from verified doctor in minutes across 80+ specialties

159 Doctors Online

By proceeding, I accept the Terms and Conditions

HCM Blog Instant Access to Doctors
HCM Blog Questions Answered
HCM Blog Satisfaction
Suggest Treatment For Idiopathic Peripheral Neuropathy

Brief Answer: B12 in clearly going to enter your muscles Detailed Answer: Good afternoon and thank you for your question on this network. Since B12 is a water soluble vitamin then, there is no doubt it is definitely penetrating into the muscles throughout your body. If your serum level is 3500 then, I would recommend bringing those levels down to a more reasonable level such as 1000 IF the elevated level is clearly due to your ingesting or getting injected with MEGA doses of B12. If you are only taking moderate to moderately high doses of B12 for the purpose of trying to "strengthen" yourself or have increased stamina then, I would ask your doctors if they've made sure that you don't have any of the following problems: Solid neoplasms, myeloproliferative blood disorders, liver metastases, liver diseases and kidney failure which are all pathologies that one should think of in the face of extremely elevated blood levels of Vitamin B12 (hypercobalaminemia). If you definitely do not have any of those types of disorders then, there really isn't any truly awful things that can happen when B12 is very high. At least no upper limit or formal toxicities for B12 are known to occur in practice. One assay that can be done also when levels in serum are this high are what are called the TRANSCOBALAMINS. Also, as crazy as this may sound....people can have ridiculously high serum levels of B12 (such as in your case) and STILL BE B12 deficient. I don't know if anyone would think to check both your methylmalonic acid as well as your HOMOCYSTEINE in both serum and urine to see if they are ELEVATED.....because then, your system may actually be running a deficiency INSIDE the cells such as the muscle and brain. This should be checked out. Here is what I use as a COMPLETE PROFILE for laboratory workup when faced with challenging NEUROPATHY cases. Random glucose, glucose tolerance test and HbA1C, folate, vitamin E (Total and FREE), cryoglobulins, hepatitis profile, (ANA), (ENA), and sulfatide levels â—¦Creatinine, BUN, FT4, TSH, Microsomal enzyme serum assay, Total T3, FT3, Antithyrogloblobulin Ab, Thyroglobulin Ag, Liver function tests, Serum protein electrophoresis (SPEP) or serum immunofixation, Urine protein electrophoresis (UPEP), anti-MAG antibodies, Total and FREE testosterone levels, Total Vitamin D, Vitamin D2 and D3 assays, Rheumatoid Factor, cold agglutinins, ESR, and CRP? I also have an entire 2nd XXXXXXX of tests if the above are negative and then, there are imaging studies for your condition as well as QST (qualitative sensory testing) and QSART (quantitative sudomotor axonal reflex testing). If I've satisfactorily addressed your question then, could you do me the kindest of favors by CLOSING THIS QUERY and be sure to include some fine words of feedback and a 5 STAR rating to our transaction if you feel the response has helped you? Again, many thanks for posing your question. How about genetic testing, muscle and nerve biopsies? Have those been accomplished and sent out? If I've satisfactorily addressed your question then, could you do me the kindest of favors by CLOSING THIS QUERY and be sure to include some fine words of feedback and a 5 STAR rating to our transaction if you feel the response has helped you? Again, many thanks for posing your question. Do not forget to recontact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this topic or others. This query has utilized a total of 41 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.