[Karengirl7]

I've posted a couple times here...all about my possible causes...I thought of something and maybe someone has heard of it? I had bad acid redux for years growing up and for about 14 years I took huge amounts of pepsid ac a day...most days 7 to 10 pills....is it possible or heard of that lowering my stomach acid that much caused a problem with vitamin absorption ? I heard they can prevent b 12 absorption if stomach acid is lowered too much...my blood work comes back normal to high b12 but I had been taking a lot of b12... Is there a different test in bloodwork to get that looks more into vitamin problems?

[mrsD]

There is another B12 evaluation test called MMA. This will be high if B12 is not working for you.

Yes, acid blocking drugs will reduce B12 absorption. They also affect Folic acid, magnesium, calcium, iron, and zinc (that we know of currently). Therefore these acid blocking drugs are implicated now in osteopenia (younger patients) and osteoporosis (older patients).
This article gives further information, and lists more minerals than I have seen so far:
http://www.nutritionreview.org/library/gastric.acid.php

If you don't use methylcobalamin, and are one of those who have genetic errors, in methylation chemistry, you may test high because of the supplements, but the B12 cyano form, will not be active in the MMA cycle. So the MMA would test high (building up) in this case. This is a common mutation, 10-30% of people have it. A doctor came on here a couple of years ago and suggested the 30% is likely. I used to post 10% only until his suggestion.

There are also tests for INTRAcellular nutrient levels. These are done by special labs... like Spectracell. Testing only the serum, which is more common by traditional doctors, is thought to be quite imperfect, since it does not show what is happening in the cells themselves.

http://www.spectracell.com/
Most integrative doctors and naturopaths, use this type of testing.

[Karengirl7]

Thank you so much...your so informative and I truly appreciate all of your information! So I'm not sure I understand....I shouldn't of Tested high in b ? I was taking 400 mils of b1 and 5000 b12 every day but when I had that blood panel done i was off it for a month and it came up high...I'm going to ask my gp for those other blood panels for vitamin levels...I also have an appointment at shands in Jacksonville ...I'm hoping they will have answers...I'm so confused that I only have it in my hands....and really unless I stress hard during the day obsessing about this...I only get it when I'm sleeping...laying down its not so much....but when I fall asleep! So strange and so hard to figure out why....I hate this

[mrsD]

If you only have problems in the hands? This could be
carpal tunnel? When I had my beginning PN 30 + yrs ago,
I had hands and feet. A physiatrist MD I had to go to for evaluation had me wear the wrist splints for carpal tunnel,
at night. This takes the pressure off the nerves going into the
hand at the wrist, and was really helpful.

If you tap your wrist with a hard thing like a wooden spoon...
at the base by the palm, and get ZINGs, this suggests entrapment there (called Tinel's sign). Soaking your hands and wrists in lukewarm water with epsom salts may also help. This would point to low magnesium and poor circulation in the hands due to the entrapped nerves there. 2 to 3 ounces of epsom salts in a pan of water is enough...soak at least 30 minutes.

http://www.google.com/search?hl=en&s...tm%3B400%3B320

My carpal tunnel was extreme when I was pregnant. Just about unbearable, but it resolved about 90% after delivery.

[Karengirl7]

I was tested for carpel tunnel...negative....and nerve studies only showed bi lateral radicupathy at c5c6... Which those nerves go to thumbs which are oddly the only fingers that do not tighten up at night....the problem went from five years ago sudden onset numbness and inflamation...actual swelling ...to now a days tightness swelling and almost locking up while sleeping... numbness i barely have anymore .tried splints...made it worse because my fingers swell so much they get too tight...I can no longer wear my rings....had shots in my fingers didn't do a thing..it's pretty odd and like yours presented....I've heard it's always starting in feet....when I'm seriously stressed my feet get a bit tingly but nothing like my hands...and that's only the past year or so...this happened to me three months after my father was killed in an accident...wondering it the trauma manasefted something or brought out a disease? I fell like the stress is making everything worse....panicking ... How did you find out the cause of your? And what is the cause of yours?

[mrsD]

Mine was hypothyroidism...

But now my doctor is blaming a drug induced lupus, for my
last attack. My hands swell sometimes too. But they do not claw up in any way. Just get numb.

Next is the HAE (hereditary angioedema) evaluation in a few months, if the recent full body swelling I had comes back after the discontinuance of the blood pressure medication, culprit.
This will require an immunologist.

[Karengirl7]

It's so scary how The doctors have so many opinions ...can make us nuts. I hope you get answers and hope it eases up for you. I'm preying I may not have PN and there may be a simple solution though my pain has been consistent and chronic since it happened.

[hopeful]

Originally Posted by mrsD

Mine was hypothyroidism...

But now my doctor is blaming a drug induced lupus, for my
last attack. My hands swell sometimes too. But they do not claw up in any way. Just get numb.

Next is the HAE (hereditary angioedema) evaluation in a few months, if the recent full body swelling I had comes back after the discontinuance of the blood pressure medication, culprit.
This will require an immunologist.

Hi Mrs. D. I am wondering how the doctors knew for sure that it was your hypothyroidism that caused your neuropathy.

I wonder why my doctors didn't tell me my hypothyroidism could be the cause of my SFN. I've had hypothyroidism for about 20 years and have taken synthyroid all of that time. I didn't know that alone could be a cause for neuropathy. I was dx'd with hashimotos 2 years ago. Am I right that hashimotos is the same as hypothyroidism?

Could this actually be the cause of my SFN?

Thanks, Hopeful

[mrsD]

When I was finally prescribed levothyroxine, my feet started to wake up. They had gone from pain, to numb over many years standing all day at my job. Once they started to tingle, then slowly over a year, it was over. No more numbness, except for the very tips of the 2 middle toes still today.

My hands improved alot too. I complained about it all to the Endo, who was totally UNMOVED ...I hated him. He was rude too. After he did the radiouptake testing, and stabilized my doses, I went back to my internist. She follows me now.
If I over use my hand or both of them, I wear the splits at night for a week or so. I just got my TSH levels back at 1.9... still stable after all these years! Free T4 was a bit out of upper range, but only by a point or 2. Free T3 was normal.

Things are so much better since those old days. And during my pregnancy it was very very bad. I lost 80% functions in my hands starting in the 5th month on.
Low thyroid leads to deposits of mucin in tissues, and in the hands and feet with the ligaments so tight, this can compress nerves. I don't know about other presentations of PN and pain elsewhere, however, because when I searched mucinosis I found very little. It is possible doctors don't know about it much either.

Originally Posted by hopeful

Hi Mrs. D. I am wondering how the doctors knew for sure that it was your hypothyroidism that caused your neuropathy.

I wonder why my doctors didn't tell me my hypothyroidism could be the cause of my SFN. I've had hypothyroidism for about 20 years and have taken synthyroid all of that time. I didn't know that alone could be a cause for neuropathy. I was dx'd with hashimotos 2 years ago. Am I right that hashimotos is the same as hypothyroidism?

Could this actually be the cause of my SFN?

Thanks, Hopeful

[hopeful]

Thanks Mrs. D. I'm so glad yours improved. I had already been on Synthroid for 15 years before my neuropathy started. My levels have been good with only a slight adjustment over the last few years. I guess that is not my answer then.
Thanks, hopeful