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-   -   Just looking for some thoughts. (https://www.neurotalk.org/peripheral-neuropathy/220172-looking.html)

questionmark 05-12-2015 11:26 AM

Just looking for some thoughts.
 
I am new to this forum. I am a 23 year old female. I am trying to get answers to what I think is peripheral neuropathy. I have tingling/burning/prickling in my hands and feet and sometimes my forearms and calf muscles. It is usually bilateral. It is rather consistent and is almost always present. It started last summer, stayed for about 3 months. It went away for about 5 months (during the cold weather) and came back. My limbs seem to "fall asleep" super easily. My hands and feet burn more if they are elevated and bent. It seems that if I straighten up/out the symptoms sometimes decrease. This all started with a sharp electric feeling in my hands when I would exhale.

I have had an MRI and nerve conduction studies.....all are normal.

My blood tests last year were pretty normal though I suspect something is up with B12 as it was on the high end of normal.....and I have been informed that sometimes that actually indicates deficiency.

I also have had problems with stored iron being low....and I also have chronic idiopathic constipation since I was 17. Despite having a good TSH value I am wondering about my thyroid.

I am usually quite physically active.

I am looking into everything.....However I am wondering about how episodic my symptoms are. I dont know if this is typical of deficiency or thyroid issues.

Just looking to see if anyone has any thoughts on this?? :)

Enna70 05-12-2015 11:46 AM

Welcome; have you looked into RSD/CRPS? My MRI came back normal and I still have the hand issues....I was diagnosed with CRPS 2, but I've had major surgeries....

questionmark 05-12-2015 11:54 AM

Quote:

Originally Posted by Enna70 (Post 1141891)
Welcome; have you looked into RSD/CRPS? My MRI came back normal and I still have the hand issues....I was diagnosed with CRPS 2, but I've had major surgeries....

Heya, thanks for the response. I do not have any visual changes in my hands and feet, but maybe there is something to this?

en bloc 05-12-2015 12:10 PM

I would suggest a skin biopsy to confirm/rule out small fiber neuropathy. This CANNOT be detected by nerve conduction studies and most with SFN have normal NCS.

You should also be worked up for diabetes (even pre-diabetes can cause neuropathy), and autoimmune disorders.

MrsD is the expert on B12, so maybe she will pipe in on your high level. Where you taking any supplements prior to it being tested? What was the level?

questionmark 05-12-2015 12:16 PM

Quote:

Originally Posted by en bloc (Post 1141896)
I would suggest a skin biopsy to confirm/rule out small fiber neuropathy. This CANNOT be detected by nerve conduction studies and most with SFN have normal NCS.

You should also be worked up for diabetes (even pre-diabetes can cause neuropathy), and autoimmune disorders.

MrsD is the expert on B12, so maybe she will pipe in on your high level. Where you taking any supplements prior to it being tested? What was the level?

Heya.

I am wondering about diabetes....however I kinda doubt Id have diabetes partially because I eat a really good diet and I dont eat sugar...or atleast very little sugar. Also This was evident in my hands before it was so in my feet....I feel like thats not usually how diabetic neuropathy happens? I could be wrong. My b12 was done last year in the summer...I am having a hell of a time getting in to see my doctor. Doctors tend to think im just nuts and getting testing done takes a whole lot of.....convincing. I do not remember what the exact b12 level was but it was near the cut off for the high end of normal. I do eat a fair amount of meat so I just assumed at the time it was that. I am taking the active form of B12 now.

Kitt 05-12-2015 01:14 PM

Welcome questionmark. :Wave-Hello:

mrsD 05-12-2015 01:18 PM

If you test high --make sure you did not take any vitamins a week before the test.

If you test high and don't take vitamins, then ask for a MMA test.
This will show if the B12 is in the active form and working. MMA should be low in this test to show active B12.

If MMA test is high, then you most likely have the DNA mutation of the MTHFR enzymes which activate cobalamin in the body.

Anyone showing high B12 when vitamins are taken daily, is rather meaningless.... it is an artificial elevation. The ranges were made from people NOT TAKING any vitamins at all.

You are not likely to have high B12 from food, as there is not enough to elevate it ... unless the food or energy drink is heavily fortified.

High B12 with no supplements, indicates several disease states potentially present. Some cancers of the blood, some liver disease, kidney disease, intestinal overgrowth of unwanted organisms, sometimes present as high serum B12. High levels of inactive B12 indicate the MTHFR mutation. The tests measure all forms of B12 and not just the methyl form.

Excess B12 in the serum will be eliminated by the kidneys (unless they are damaged and not working well).
High levels only indicate disease in the body, but the B12 itself is not toxic. For those with the rare condition called polycythemia vera, excess B12 may contribute to the red blood cell elevation. But this is evident in the CBC testing.

questionmark 05-12-2015 01:38 PM

Quote:

Originally Posted by en bloc (Post 1141896)
I would suggest a skin biopsy to confirm/rule out small fiber neuropathy. This CANNOT be detected by nerve conduction studies and most with SFN have normal NCS.

You should also be worked up for diabetes (even pre-diabetes can cause neuropathy), and autoimmune disorders.

MrsD is the expert on B12, so maybe she will pipe in on your high level. Where you taking any supplements prior to it being tested? What was the level?

Quote:

Originally Posted by mrsD (Post 1141921)
If you test high --make sure you did not take any vitamins a week before the test.

If you test high and don't take vitamins, then ask for a MMA test.
This will show if the B12 is in the active form and working. MMA should be low in this test to show active B12.

If MMA test is high, then you most likely have the DNA mutation of the MTHFR enzymes which activate cobalamin in the body.

Anyone showing high B12 when vitamins are taken daily, is rather meaningless.... it is an artificial elevation. The ranges were made from people NOT TAKING any vitamins at all.

You are not likely to have high B12 from food, as there is not enough to elevate it ... unless the food or energy drink is heavily fortified.

High B12 with no supplements, indicates several disease states potentially present. Some cancers of the blood, some liver disease, kidney disease, intestinal overgrowth of unwanted organisms, sometimes present as high serum B12. High levels of inactive B12 indicate the MTHFR mutation. The tests measure all forms of B12 and not just the methyl form.

Excess B12 in the serum will be eliminated by the kidneys (unless they are damaged and not working well).
High levels only indicate disease in the body, but the B12 itself is not toxic. For those with the rare condition called polycythemia vera, excess B12 may contribute to the red blood cell elevation. But this is evident in the CBC testing.

Thanks for the feedback. I am not exactly sure what test was done for B12. At the time my doctor said it was just high end of normal B12. I also had normal readings on kidney function. Is serum B12 and inactive B12 the same thing? I was told by someone else that having high B12 in the blood without supplementation could indicate that I am not utilizing the B12 properly. They said a trial run with supplementation of the active form would be a place to start. Am I missing something?

janieg 05-12-2015 05:49 PM

Quote:

Originally Posted by questionmark (Post 1141887)
My blood tests last year were pretty normal though I suspect something is up with B12 as it was on the high end of normal.....and I have been informed that sometimes that actually indicates deficiency.

Just in the "for what's worth category,' there's a pretty common genetic mutation carried by about 20% - 30% of the population that results in better absorption of B12 and higher serum levels. I run high-normal and do have this mutation.

Additional studies have been run confirming this, but this abstract from 2008 was brief.

http://www.ncbi.nlm.nih.gov/pubmed/18776911

"Women homozygous for the rs492602[G] allele had higher B(12) levels."


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