Severe Neuropathy/Severe b12 defficency problems
 

Hi there, im 38 My symptoms Started w/ a weird numbness in my left pinky finger, then just spread through the palm of my hand, then both hands, now my feet, legs & arms too! At times the pain is unbarable, since all this began, i literally have no feeling in my hands & feet, & legs too, my walking has got worse, & my daily activities r horrible! i feel at times (NOT REAL) im on Neurontin, along w/ twice a week B-12 shots, that my husband has to give me. Ive had MRI's EMG, & many-many blood tests. All the blood work came back ok, but i do have lesions up & down my spine into my brain stem! I seriously cant handle much more.

Now going to a Gastaologist in July b/c my body also has an absorbtion problem, not to be gross, but (EVERY MORNING) i have severe diarehha atleast 2-5 times, & trust me, sometimes i dont make it, its very embarrassing, & a feeling of helplessness! I just hope & pray this can & will get under control & soon too, b/c im not 1 to be so depressed, im usually an upbeat person, & this is really hurting my self esteem, i just feel like this will never get better! I enjoy going shopping & being w/ my family/friends, but lately, who wants to, when u feel so odd? Just was wondering if u or anyone else is going through this starnge & scary problem. TY for reading, Gina*

Welcome to NeuroTalk:

It is too bad you have to wait so long to see the proper doctor.

Food intolerances can upset people quite a bit. Fructose and gluten will cause diarrhea, in people intolerant to them.

People who use lots of antibiotics, may develop colitis or other imbalances in normal bacteria in the bowel and this leads to diarrhea.

If you use proton pump inhibitors or H2 antagonists for stomach acid, you can develop diarrhea from them. Prilosec (Nexium) or Zantac/Pepcid. This is due to poor protein digestion which feeds bacteria in the bowel, which then ferment the contents and cause gas/diarrhea. This leads to malabsorption of B12, folate, calcium, iron, zinc and magnesium, which all need acidic conditions to be absorbed.

Chronic diarrhea, causes loss of potassium and magnesium and getting low in these cause all sorts of problems. (muscle cramping is major).

Do you have this diarrhea all day long? Or only in the morning?
If only in the morning, that suggests a colon problem. I'd look at your diet carefully and see if you can find triggers.
First off stop all sugar and starchy carbs. This can starve bad organisms that are fermenting your food. Fructose in fruit, also can cause a diarrhea of its own. If you feel better on this elimination diet, that is a huge hint, that you have something that can be fixed.

The gastro doctor will probably want to test for Celiac and gluten issues, so you need to be eating wheat products before the testing, so they can be detected. So you can reintroduce them 3 weeks before the tests, so they will show up if you stop them now.

Do you know what your B12 result was in numbers? If it was very low, below 200, damage could have happened already to your spinal cord. This may or may not be correctable depending on your body's healing capability. The new cut off for normal is 400 in US units.

TY so very much for responding back so quickly! Was not expecting that ;o) I only have the diarreha in the morning, & i mean (EVERY MORNING) Very severe too. Like i said im seeing a G.I. In July. I sure hope theres no permanent damage, but, i have a really bad feeling. I eat too, & ive heard i may have a severe absorbtion issue too. My B-12 level back in 2006 was around the 200 level, & the last time that it was checked, it was around the 400 level. Im actually going to get my levels tested again this Friday B-4 my shot. & trust me, i dont think its got much higher! I just wish my Neuro. would bumb up my B-12 shots to 3 x a week, but i guess thats up to him, & what my level is. TY again for commenting. Its just so very frustrating, & scary as well, b/c i cant nor shouldnt have to live like this forever! Im not saying im old, but im not in my 20's either, but this is not how i want to be for the rest of my life. Its so depressing & such a helpless feeling. Im trying sooooo hard to stay positive, but its really getting to me! Thank God i have such supportive Family & Friends, or id be even in worse shape! Guess i just have to hang in there & hope for the best, & have faith in my DR.'s....

B12 from injections typically hangs around in the blood for about 72 hours before the tissues absorb it. If you have a test within that time period, it will be falsely elevated.

If you continue to be low even with injections, that might point to a DNA mutation in the methylation of B12 and folic acid in the body. This is common and often overlooked by doctors.
Injectable B12 is most commonly cyanocobalamin and it has to be methylated to methylcobalamin in the body to work on tissues.

I'd suggest you get a MMA test and also homocysteine. These two tests will show if B12 is actually WORKING and not just floating around. If they are elevated, you need to take the methyl form of B12 --injection from compounded pharmacies or oral 5mg a day on an empty stomach. This bypasses the DNA error and then the tissues of the body can use the B12 normally.

The DNA test is called MTHFR reductase test, and will show if you are not methylating properly. It costs about $125 now and doesn't even need a doctor's order anymore.

People here taking 5mg of methylcobalamin orally on an empty stomach often get blood work in the 1000-2000 range.
The blood levels in your body need to be high so the B12 can diffuse into your spinal cord. If you are low, not much gets there. So having very high levels will greatly enable it to move into the cord.

Severe diarrhea does come to people with very low B12. It is a ominous sign, that you are very low for a very long time.

Welcome.:)

I hope you get help from your doctors. Having doctors that can help you heal with supplements is also important. There are a lot of supplements and great foods to help along with what reg doctors can do.

I am sorry about your problems and I hope you get answers soon. Maybe they will have a cancellation and you can go soon?

TY, so many things i have to discuss w/ my Neuro next time i see him, & trust me, they'll be brought up. Im going to write down many of the ideas u suggested! Ty again, & hopefully things will began to change! ;O)

TY sweety for ur ideas, ive heard so many things inregards to food choices! I will definetly bring all these suggestions up to my neuro. the next time i see him. TY ;o)

Just remember:

Most neuros don't know anything about diet, new B12 data, or
supplements.

This medical site is a continuing education for doctors on the B12
subject.
http://www.aafp.org/afp/2003/0301/p979.html
But it even does not have information about methylB12.

Here is the B12 thread link:
http://neurotalk.psychcentral.com/thread85103.html

If you want the newest information, it is on that thread.
Don't expect your doctors to know it however. It would be nice if they did, but many don't.

Good luck!