Neuropathy(arms, back, legs, feet), fatigue, rash, All tests come back negative so fa

[CTMOM]

5 years ago i started having a rash on my forearms - i still have it:confused:
in addition to my rash i was VERY fatigued have brain FOG and diagnosed with chronic fatigue and Epstein-barr syndrom. Went to naturalpath and put on nice diet and gained 40 pounds.
2 years ago (new insurance-so new doctor) still VERY fatigued diagnosed with metabolic disorder, fatty liver and lypoma just off the liver and i am still gaining weight:o Doctor said another 6 months i would be dead! Need to lose 100lbs immediately! Needless to say i went into panic mood! Went on colonix - worked great mental fog went away for the first time!!! Tried a combo a the Fat Flush Plan eating foods Right for My Blood Type and working out. Went on a roller coaster lost 45lbs became fatigued so gained weight back still fatigued now depressed lost 40lbs living this diet perfectly... THEN-
3 months ago i got and was diagnosed with carpal tunnel but i also had same pain and tightness through my back and legs and bottoms of my feet. So, guess what - gained all weight back.
Now i am fatigued, over weight and in terrible pain. All blood tests from regular Doc say i am normal. Went to Nerologist who is the chief of staff at a hospital and he directed me to a rheumatologist. My vitamin b tested 300 further test for vit b def. said i am normal. PLEASE HELP WHAT SHOULD I DO NOW. 5 days ago i sent off samples to Entero labs and am waiting for results....

[rose]

I think you will find a lot of valuable information on the peripheral neuropathy forum. Regarding the vitamin B, if you are referring to B12, 300 is an especially suspect low-normal. B12 serum testing is not reliable.

http://roseannster.googlepages.com/home

rose

[Cry Tears]

Hello..and welcome to BT family.
I'm so sorry you're having horrible problems like you have.
I too have been thru the gammat of doctors, all sorts of diagnosis, INCLUDING carpul tunnul (had surgery...still hurts!:eek: )
You sound so much like my case only I was so fatigued I was bedridden for over half a year till I finally found BT and listened to expert Rose and MrsDoubtfyr...read all they've written AND took the Methyl B12.
My neuropathy was all over my body as well....I burned like hadies! Only thing offered was mind altering Nuerontin...made me feel numb brained and stupid...couldn't even drive a car let alone watch cartoons!
I've read so many places that B12 deficiency is tied to Carpul Tunnel! I had the surgery 20 years ago and my hands still hurt where they cut me...it stings all the time now...its just a nightmare! DO NOT have the surgery if you haven't tried a years worth of B12!
I was told my B12 level was normal too...232...:eek: and told my nerve conduction and EMG testing proved I had severe case of Neuropathy. Even my lips burned like someone had spread chili on them. I also lost all sense of balance and had to use a walker just to get to the toilet.
I felt I had just months to live back then....I didn't drive for entire summer and had spinal shocks which is indicative of spinal cord damage caused from B12 deficiency. I knew I had only a short time to live. Fortunatly my husband got a lap top computer as I couldn't sit long enough in a chair in front of anything...so I lay in bed searching the cause for PN. It took me a long time to finally find this website, BT. That was in Sept 2004..or was it earlier than that...lost time...anyway...I took what was written here about B12, began taking it Sept 3 2004. In mid October I was "well" enough to travel on my own to the appointment made 6 months earlier at Mayo Clinic. They repeated the NC and EMG...it was now normal! They said probably all my symptoms were perhaps a B12 deficiency...but wouldn't put it on paper as a final diagnosis. I do have other health issues that continue to plague me now.
I do beleive a lot of my latest problems are my body making the repairs long time needed...because it comes and goes. But I've been advised these repairs can be awful frightening...they are...but I keep it in mind that my body suffered too long and will some day feel much better once the repairs are made.
The best advice is for you to read all you can about B12 deficiency AND next step take it as soon as possible...like tomarrow! But must be the Methyl B12 sublingual...easy to find at just about any health food store and cheep too!
I do wish you well. Keep in touch and rest assured the advice given here is proffesional, trustworthy and medically proven!
Its just too bad the doctors aren't reading the latest info on all this.
Blessings, Cheryl

[CTMOM]

Dear Rose and Cheryl,

I hope you see this! Thank you both for responding! This is my first time posting a message and after reading it it made me laugh - i just sent out a note of symptoms and never stated what i needed or hoped for- so i am VERY appreciative!!

I just received test results back: 1. Vit B12 serum is 293 2. Folate serum is 13.1 normal being anything greater than 5.4 3. Methylmalonic Acid serum 108 87-318 being normal. DOCTOR CALLED SAID I AM NORMAL NO VIT B DEF. NO SHOTS!!!! WHAT DO YOU RECOMMED I DO NOW?

[annelb]

I am not Rose or Cheryl but I do want to share this article with you.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&list_uids=16814909&cmd=Retrieve&indexed=google
Blood Rev. 2006 Jun 29; [Epub ahead of print]
Disorders of cobalamin (Vitamin B12) metabolism: Emerging concepts in pathophysiology, diagnosis and treatment.Solomon LR.
Section of Hematology, Department of Medicine, Yale University School of Medicine, 300 Cedar Street, New Haven, CT 06520, United Kingdom.

Although cobalamin (vitamin B12) was isolated almost 60 years ago, its biochemical, physiologic and neurologic effects remain incompletely defined. New observations suggest renal regulation of cobalamin metabolism; actions of cobalamin on nucleic acid and protein function; and a role for cobalamin in cytokine and growth factor regulation. Clinically, no gold standard has emerged for the diagnosis of cobalamin deficiency. Moreover, cobalamin resistance may occur in diabetes, renal insufficiency and advanced age, leading to functional cobalamin deficiency despite adequate cobalamin nutriture. Finally, high-dose cobalamin therapy may have salutary pharmacologic effects on neurologic function in a variety of disorders. Many studies lacked appropriate control groups. However, at this time, therapeutic trials with pharmacologic doses of cobalamin are suggested when findings consistent with cobalamin deficiency are present regardless of the results of diagnostic tests. While oral cobalamin immediate-release is adequate for many patients, its effectiveness in reversing neurologic abnormalities has yet to be established.

PMID: 16814909 [PubMed - as supplied by publisher]
One of the "Practice Points" in this article is
Since cobalamin, methylmalonic acid and
homocysteine levels fluctuate and neither
predict nor preclude responses to cobalamin,
cobalamin therapy is suggested for
symptomatic patients regardless of the
results of these diagnostic tests.

Taking methylcobalamin, which is B12 in a form the body can use without converting, is inexpensive. Many of us take at least 1000mcg a day. Please read Rose's B12 information.
Anne

[annelb]

5 days ago i sent off samples to Entero labs and am waiting for results....

Have you found the Gluten Sensitivity/Celiac Disease forum here on Braintalk?
http://brain.hastypastry.net/forums/forumdisplay.php?f=152

Three years ago - well, really almost 4 years ago I tested positive through Enterolab. The gluten free lifestyle has turned around my life. I was a point I thought I was dying. My fatigue was horrible. I now have more energy than I have had in many years.

Takes about 3 weeks to get the results. If you want, the people on the GS/CD forum would be more than happy to wait with you.

Anne

[rose]

Thank heavens you do not need a doctor to treat for possible B12 deficiency. Regardless of the testing you had, it has not been ruled out and I would certainly treat if it were me.

Please read: http://roseannster.googlepages.com/home

There isn't a whole lot to read, and when you are finished you will know more than most doctors (unfortunate but true).

The size of the dose is very important!

Then, I would take Anne's advice. The gluten forum is outstanding.

rose

[CTMOM]

Rose,

Did you have any neurological problems?

Magie

[rose]

Magie,

Yes. My central nervous system was damaged unnecessarily.

rose

[tinglebell]

It seems a big coincidence re: the carpal tunnel syndrome. I also had pain in my right wrist which would shoot up my arm for a long time before I was diagnosed with B12 def. I was doing a lot of photo editing on the computer and I thought I had cts. But of course, I never saw a dr. for it, and now that is the one thing I don't have anymore, since being treated. I wonder if this could be an early sx of def. and some folks are being diagnosed as cts. Just a thought. Usually everything is bilateral, but I never overused my left wrist.

Dianne

[mlsteven]

So sorry to hear about what is going on.

I am asking this in a sympathetic way - are you absolutely sure the way you've gained weight makes sense?? I am asking because I was accused for years by my doctor of just "liking food too much," "eating too much," and "being too stressed."

After 10+ years, I found out I have a very real hormonal problem (too many androgens and probably cushings syndrome/disease.) If your weight gain does not make sense, or makes only a little bit of sense, consider that it might be a symptom.

I also started eliminating gluten/wheat from my diet about 2 1/2 weeks ago, and I do feel a little more energetic.

It seems like there are some very good leads for you to follow from the posts. Good luck; I hope you find the answers you need soon.

-Megan-

[JJH]

I know this is an old thread, but I came across something I thought was interesting and I hope it is as valuable to others as it has been to me.




Here is an excerpt from the article:

MEASURING B12 DEFICIENCY

American medical opinion defines blood levels lower than 200 pg/mL as an indication of deficiency. This number is based on the level associated with the most severe manifestation of deficiency, pernicious anemia. In contrast, the lower limit in Japan and some European countries is 500-550 pg/mL, the levels associated with psychological and behavioral manifestations such as dementia and memory loss. Physicians in these countries consider blood levels of 500-1300 to be the normal range.19

According to Dr. John Dommisse, an expert in B12 deficiency, the acceptance of high levels as normal in Japan, and the willingness to readily treat psychiatric symptoms with B12 explains the low rates of Alzheimer’s dementia in that country--as well as the reason for the very high rates of Alzheimer’s in the US.20

Even with the very low cutoff currently considered the risk point, large numbers of Americans are deficient. In the ongoing Framingham Offspring Study, involving 3000 men and women in the town of Framingham, Massachusetts, researchers found that 39 percent had B12 levels in the so-called "low normal" range, that is below 258.21 Had the researchers chosen the optimal range of 1100-1300 as a measure of B12 status, very few would have qualified as B12 replete.

One of the most surprising findings of this study was the fact that the youngest group (26 to 49 years old) had about the same B12 status as the oldest group (65 and up), an indication that deficiencies are becoming more common.

[skeetelmore65]

Hello..and welcome to BT family.
I'm so sorry you're having horrible problems like you have.
I too have been thru the gammat of doctors, all sorts of diagnosis, INCLUDING carpul tunnul (had surgery...still hurts!:eek: )
You sound so much like my case only I was so fatigued I was bedridden for over half a year till I finally found BT and listened to expert Rose and MrsDoubtfyr...read all they've written AND took the Methyl B12.
My neuropathy was all over my body as well....I burned like hadies! Only thing offered was mind altering Nuerontin...made me feel numb brained and stupid...couldn't even drive a car let alone watch cartoons!
I've read so many places that B12 deficiency is tied to Carpul Tunnel! I had the surgery 20 years ago and my hands still hurt where they cut me...it stings all the time now...its just a nightmare! DO NOT have the surgery if you haven't tried a years worth of B12!
I was told my B12 level was normal too...232...:eek: and told my nerve conduction and EMG testing proved I had severe case of Neuropathy. Even my lips burned like someone had spread chili on them. I also lost all sense of balance and had to use a walker just to get to the toilet.
I felt I had just months to live back then....I didn't drive for entire summer and had spinal shocks which is indicative of spinal cord damage caused from B12 deficiency. I knew I had only a short time to live. Fortunatly my husband got a lap top computer as I couldn't sit long enough in a chair in front of anything...so I lay in bed searching the cause for PN. It took me a long time to finally find this website, BT. That was in Sept 2004..or was it earlier than that...lost time...anyway...I took what was written here about B12, began taking it Sept 3 2004. In mid October I was "well" enough to travel on my own to the appointment made 6 months earlier at Mayo Clinic. They repeated the NC and EMG...it was now normal! They said probably all my symptoms were perhaps a B12 deficiency...but wouldn't put it on paper as a final diagnosis. I do have other health issues that continue to plague me now.
I do beleive a lot of my latest problems are my body making the repairs long time needed...because it comes and goes. But I've been advised these repairs can be awful frightening...they are...but I keep it in mind that my body suffered too long and will some day feel much better once the repairs are made.
The best advice is for you to read all you can about B12 deficiency AND next step take it as soon as possible...like tomarrow! But must be the Methyl B12 sublingual...easy to find at just about any health food store and cheep too!
I do wish you well. Keep in touch and rest assured the advice given here is proffesional, trustworthy and medically proven!
Its just too bad the doctors aren't reading the latest info on all this.
Blessings, Cheryl

Dear Cheryl,someone here to say I know how you feel.I want to tell you that the best approach to B12 is to take the injections.I was so bad and I was looking on the net to try to find answers like you and everyone else here who's suffering.I got to where I stayed in the bed because my feet were like risons and my legs hurt so badly.I just layed there and was blessed that I had someone to help me.I can just imagine if we didn't.I know the Big Guy up-stairs is carrying us right now(Foot prints).I pray all the time and I do have faith that one day my life will be close to normal.It's really bizzare how it worked.I gave myself the shot(1mg.)around 4:30 p.m. one day and the next day I got up and walked.You want to know what else I was able to do.I played a video game w/my son and I don't play anymore or haven't in 2 yrs.It was amazing.It truely helped me.I have heard that if you take folic acid for a supplement it will mask if you have a B12 difiniency.I was and I believe the doc just didn't catch it.You should try it,it's easier than I thought it would be to give myself my own shot. The first time it took me all of 30min. just to inject myself.Well, now I take one every wk. and I have notice an improvement tremendously.If you lack B12,it can cause some serious nerve problems.It's hell on earth(the only way to describe it).About the Mayo Clinic,they told me that I was to chronic for them to see me.That just don't sound right,does it?What up with that?I don't understand.They should at least try. I am only 43 and have two boys that are still young(11,16).They need their mom so much and I have got to get better. I know I need surgery. I had 2 MRI's yesterday ordered from my PCP and I know they will see the problem.I believe I have a herniated disc in L's somewhere.I had surgery already on my C's(C5 diskectomy). Hey, contact me if you want.I took my med. and feel like I need to lay down. My back feels like it's broke::confused:Take care and hope to hear from you soon and I hope I helped someone else here.:) Karen skeetelmore65@yahoo.com.au

[skeetelmore65]

Dear Rose and Cheryl,

I hope you see this! Thank you both for responding! This is my first time posting a message and after reading it it made me laugh - i just sent out a note of symptoms and never stated what i needed or hoped for- so i am VERY appreciative!!

I just received test results back: 1. Vit B12 serum is 293 2. Folate serum is 13.1 normal being anything greater than 5.4 3. Methylmalonic Acid serum 108 87-318 being normal. DOCTOR CALLED SAID I AM NORMAL NO VIT B DEF. NO SHOTS!!!! WHAT DO YOU RECOMMED I DO NOW?

Hey CTMOM, I am so glad you found us.I am so glad I found us.It sure has been nice to just be able to vent to someone who completely understands!!! @the B12,the doc. ran test on me to but,didn't come up defiencient. I was so tired of hurting and just laying around that I asked the doc. for a presc. of B12 inj. I used to take them just for fatigue not for any nueropathy.I was so surprised how fast it worked, I must have been on the verge of pernicious anemia.It got me out of the bed the next morning that is how much it helped me.Just read my post. I played a game of guitar hero w/my son and have never even played it..It was amazing how it worked but just for 5-7 days then my feet started to get sore again so I gave myself another one(1mg.) but it worked again. I then knew someone boo-booed somewhere.I did find out that if you're taking folic acid (in which, I was when I had my test done)that it will not show your B12 defieniency. I hope I helped you in some way. If you need my email me.I do check my email @ every 2-3 days so I will get back to ya. Take care:)...K
skeetelmore65@yahoo.com.au

[aldoween]

And where are photos of your rush?