Chronic Fatigue or b12 causing neurological problems???

[graham]

In April 98 I went to my doctor concerned about mild tingling in my lower legs and occassional tightness in my right calf. My doc was unconcerned.I returned a month later and he reluctantly sent me to a neurologist saying I needed reassured that nothing was wrong. The physical exam  was normal as was a brain scan. I was told nothing was wrong but no explanation.
Aug 98, still concerned and saw another Neuro who carried out  nerve conduction studies which showed " some motor conduction abnormalities in the common peroneal nerve territory on the right side, of a relatively mild but definate nature". He did not think this sufficient to diagnose a neurological disease. Blood tests which were normal ( b12 was 289pg/ml). In Dec 98 I had a spinal fluid test which was normal, b12 level now 197pg/ml. Consultant said significance was doubtful. My doc thought it was normal.
I read b12 studies whch suggest it could be a problem but doc says no.
My condition since then has worsened, burning and tightness in both legs, toes on right foot splaying out, jerky movements when moving fingers. Muscles are sore, head fog and memory problems, visual changes & fatigue.
Changed doc in 2000, b12 was 192pg/ml, later 189 pg/ml. Saw first Neuro who now said she couldn't find proper relex response at ankles,no change in nerve studies & schilling test ok. Still no dx.
Recent MRI showed some nerve compression lower back which they dont think resposible for general symptoms. Heart scan showed " unusual orientation" but not significant.
DX appers to be CF, could b12 deficiecy be causing problems.

[CCF-Neuro-M.D.-JT]

It's possible that a B12 deficiency could be causing some of your symptoms such as the burning sensations in your legs, but it doesn't explain all of them. If no one's quite sure if your B12 level requires treatment, I would recommend additional blood tests for homocysteine and methylmalonic acid, both components of the metabolic cycle of B12. If they are high, that helps to confirm a true B12 deficiency.

Also consider seeing an eye doctor about your visual changes. You can get an optic neuropathy as well as some cognitive changes with B12 deficiency. good luck.

[bcrfowler]

I have low range b12, my count is 218.  My sister had hers tested and it is 178, she has been dx with perenious anemia.  She is currently getting b12 shots once a week.  I'm receiving b12 shots once a month.  I have had the same symptoms.  The past two years (at least) I've had symptoms and went to the doctor.  He didn't seem to think I had a problem, as my main complaint was not sleeping.  He wanted to give me sleeping pills.  In Nov. I went to a different doctor that didn't have a problem testing me.  Which lead me to current dx.  Find a doctor that knows about b12.  At your level you should be being treated.  If nothing else take b12 vitamins.  Go to www.braintalk.org, and search P. Neuropathy sight.  There is alot of info on b12 deficiency.

[Kiana]

You mentioned a "splaying" of your toes and for that I have a suggestion. Do a search on "Morton's Neuroma", these neuroma's will cause your toes to splay out. You probably have more than one thing going on here, but you probably already know that.

Good Luck,
Kiana

[The Dude]

Listen to your Doctors.  The internet has too much knowledge on it, so much that you can begin to scare yourself into thinking you have almost anything.  I wish you well and by all means; do whatever it takes to put your mind at ease.  Take a B-Complex, that's what I do, just not everyday.  Try every three or four days.  You don't want too many B vitamins.

Good Luck,
Lachoza

[graham]

Thanks very much to the Neurologist for the advice, I will follow it up.
B Fowler - thanks for the advice about Braintalk, I have seen there that many people are receiving treatment with higher levels than mine. It seems incredible there is such a difference in the medical profession as to what levels are safe. I hope you and your sister keep good health.

Kiara - I will have a look as you suggest, thankyou.

Lachoza - Many thanks for your comments, I can only say that I have never had hang-ups about my health and only started looking for answers myself after two years of no explanation. The doctors I saw during that time carried out tests which gave abnormal results, the problem was I was never given an explanation for their results, basically they didn't know, I ws not disagreeing with them, there was nothing to disagree with. It is only recently that I had an MRI of my spine, after four years of unexplained painful tingling in legs and arms. I saw two neurologists a total of eight times over three years (98 - 2000) and neither saw fit to examine my spine, just how safe is that.
I take your point about the mass of information on the net, much of which is contradictory, but sometimes you have no other options open. Many thanks for responding

[eloridas]

I agree with Lachoza's advise to stay away from the "self diagnose".  I personally think it either scares the patients or "feeds" the hypocondriacs and makes th doctors jobs that much more difficult.  I only use the internet for updates on medication, does and don't (foods to avoid, activity to avoid, etc.) or to ask questions like to this forum--mainly so I can ASK the right questions, when I'm being examined.  Good Luck!!

[L Cline]

3 years of neurological testing for severe tingling shocking/burning pain over most of my body at different intervals different times. Abnormal NVC's EMG's SSER's. Abnormal tissue biopsys and autonomic tests. Normal MRI's Brain. discectomy w/fusion & plate @C6-7 bulging above. Stenosis at l4-5, L-5 S1, S1 S2. Carotid stenosis both sides. Only Dx is small fiber periphral neurapathy. moderate sensory loss through out. Vast array of medications including Neurotin, Elavil, Tegratol, Tramadal, Topamax, Lodine,Lamactil, & Ibuprophen. Lastest Rx is for Duragein patches 25 mg. Looking for a Neurologist willing to take the time to review records and take a fresh look at this " difficult case to put together"

[graham]

Eloridas, Re your comments about problems of self diagnosis and it making doctors lives more difficult. I think you missed the point in my post. I had deteriorating symptoms for nearly four years and it was only latterly that some form of diagnosis CFS was offered after changing GP's. It wasn't a case of disagreeing with the many specialists who had carried out tests, I was told they did not think I had a neurological disease, although the tests showed abnormalities and left at that. In situations like that, which unfortunately many people find themselves in, your choices are to lie down knowing you are getting worse or try and find answers yourself. If that means I am feeding my hypocondria then I'm guilty as charged.
All advice is welcome on this forum,but try and stay a bit more positive.
I've read your question above and hope you get some answers.
Good luck.

[patches748]

I think it is the hardest thing in life:  knowing you are sick and/or having something wrong with you that is getting worse and worse.  If I were a doctor I would rather error on the side of a person being a hypochonriac then know I was not diligent about finding out what could be wrong.  There are too many cases of people who end up suffering permanent damage (like many of us) and we have to live with that disability.I was diagnosed (finally!!) in 1999 with subacute combined degeneration of the spinal cord due to B12 deficiency and my B12 level at tht time was 294. There is a lot of new research now that is showing some people are suffering damage in that range or lower.....Japan and a few European countries are not uses a low level of B12 at 500...as research is showing we may start to get damage before our B12 level (here in US is 200) gets low.  I thought we took care of the problem when I was diagnosed but my neurological problems are getting worse and now have atrophy in both optic nerves.  Recently had a homocysteine test done and my level was 45.9 with normal being below 12.  This can be an indicator that, for some reason, the B12 shot is not enough.  I would encourage anyone to do their own research (but we really cannot self-diagnose) but for some kind of idea.  It is only human nature to want an answer to what we have so we can deal with it....I tend to believe there are more people being honest abuot having something wrong then those who only wish it to be.  We know our bodies the best.  Gook luck in finding someone who can help you and I am not again on the same mission to stop my progress...I can live with the disabiities I have now but cannot live with the ones I would have if they do not stop it.

[patches748]

meant to say:  Japan and several European countries are now using the B12 level as below normal under 500

[graham]

Patches, thanks very much for your reply and clearly understanding the problems of unsatisfatory or no diagnosis. I feel like I am a victim of Geography.

If I resided in th USA, or several other areas of the world, I know from several reports I have read that I would have been accepted as clinically b12 deficient in Dec 98, when my b12 level was 197pg/ml ( got as low as 189pg/ml in 2000, before I passed a Schilling test when the injected b12 raised it to 287pg/ml). But I stay in Scotland and the the medical profession here think if you are above 155pg/ml then you cannot have this problem unless you have anaemia or your MCV is elevated.

Again I know from reports that this is not the case. The medical profession is constantly criticised here, very often unfairly, but one thing is clear, if you are outside their circle you have very little chance of anyone paying heed to you.

I am sorry you were allowed to get so unwell, I hope perhaps some of your problems may rectify with treatment.

Many thanks and good luck to you.

[eloridas]

No, you took what I said wrong--it was an in GENERAL statement.  Unfortunately, because of insurance changes I found myself with all different docs.  I too had abnormal tests in my file, that where not addressed--BUT, let's just say I didn't lay down and WAITed for the tests to be done--I constantly complained for months.  ALL of my son's docs reassured me and told me to push, they would back me up.  You see 6 years ago, my premie son was sent home and I was told to keep him free of pain and enjoy him as much as possible.  He despiratedly needed open heart surgery, but had a severe seizure disorder.  He was denied the surgery--they said he was not worth while saving.  My son's docs reminded me of how I conducted myself, and getting the surgery done for my son (who by the way has attended school since the age of 3 and is the head of his class).  The way I did it was to be calm--not get frustrated and SHOW them that my son was developing mentally.  SO I used the same principle and show them what was wrong with me--NOT tell them.  And for my own peace of mind I didn't try to find out what's wrong on my own--therefore, when I was examined, I was more relaxed and easier to work with.  BUT, I do have some questions, and I do respect the docs answering (A:) on this forum, after reading some of there responses for other people and myself in the past--SO that's why I ask them questions.

[eloridas]

Re-reading the answer that the doc on the forum gave you is straight forward.  If those two blood tests and/or the eye exam would come out positive, then your doc couldn't deny you for the B12 deficiency.

[graham]

Eloridas- Thanks for clarifying your original post, I know your intentions were good, just that I think on a forum like this, where many people are searching for answers, and perhaps questioning themselves in the process, references to hypocondria might be a wee bit negative. I did not think it was aimed at me, I suppose I was just making a point.

I have never said to a doctor, nor will I, that I have b12 deficiency, what I have done is pass on information sent to me by qualified persons and asked them to consider it.

It must have been very difficult going through the experiences with your son and the medical profession, I wish both you and he good health.

[eloridas]

My son now goes to a children's cancer center.  A "specialist" didn't listen to the symptoms I gave her last year and made me feel I wasted her time (NOT one of my son's "normal" docs).  The way I see it is she wasted my son's.
I'll never know why you picked my response though, there was an earlier comment that just about took the definition for  hypochondriac right out of the "Webster" dictionary.

[Concerned lady]

Yes, a deficiency of Vitamin B 12 can definitely cause a peripheral neuropathy.

Do any of you take ACID BLOCKERS for Gastro-Esophageal Reflux? Acid blockers prevent "Intrinsic Factor" from being produced in the stomach, because to produce "intrinsic factor", there must be an acidic environment.

When someone is on acid blockers, no intrinsic factor is produced, and intrinsic factor must be present with Vitamin B 12, in the duodenum (first part of small intestine, just past the stomach), in order for Vitamin B 12 to be absorbed!

When Vitamin B 12 is not absorbed, nerve damage is the inevitable result. First the "peripheral nerves" are affected, and then the central nervous system (brain & spinal cord).

It is interesting and sickening to me that the manufacturers of acid blockers have conveniently avoided following up on those who have been taking acid blockers for extended periods of time (months to years).

If proper studies were done, I am sure the truth would be too obvious to ignore: Acid blockers cause peripheral neuropathies!

PLEASE visit the http://www.braintalk.org "Peripheral Neuropathy" forum, as was already suggested. This neurological patient-to-patient forum can help procrastinators do something nice for themselves, that is TAKE ACTION, AND CLAIM CONTROL OVER THEIR OWN BODIES. YOUR BODY IS NOT OWNED BY YOUR DOCTORS. YOU OWN IT.

Which is better? Dying or getting a permanent nerve damage condition, because of fear of trying something new, like taking Vitamin B complex and Vitamin B 12? OR, THINKING OUTSIDE THE BOX, AND TAKING SOME ACTION!?

The http://www.braintalk.org forums are being worked on, and hopefully will come back on line tonight or tomorrow.

If I hadn't self diagnosed sometimes, I would still have certain health problems needlessly.

It is true that there is a risk. But there is also a risk in following some doctor's orders that may be based on lack of knowledge or consideration (not these docs here, whom I do respect-- I'm talking about some docs who don't believe that vitamin deficiencies can cause neurological problems).

I think one of the problems of modern medicine is the extreme specialization, to the extent that each specialist forgets that there is a whole person there, with many INTERACTING systems.

If only every doc would THINK VERY MUCH about exactly what their patient eats, and exactly what meds the patient is taking (bad side effects of those meds), and what interactions there may be between the drugs, the foods, etc.

I believe that patients need to again become an active PART OF THE MEDICAL TEAM, instead of being the passive recipient of "doctors' orders".

I also truly believe that the best docs would welcome this, and not be threatened by it.

Sincerely, Concerned lady

http://cantbreathesuspectvcd.com
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[Richard48]

Concerned Lady has something here.... I posted a question on Jan 21, about multiple wierd symptoms for 2+ months.  On monday afternoon, I got a B-12 shot, and on Tuesday I STOPPED taking the acid blockers (prevacid, aciphex at different times for nearly 4 months, for GERD and ulcers).  ALL, count them, ALL of my symptoms have as of today, 5 days later, either disappeared entirely or diminished so much they are barely noticeable.  Now, obviously, various people's circumstances demand careful thought, and there's no miracle cure....  But I'd absolutely agree with Concerned Lady about the acid blockers.  All of my problems began after a month of aciphex -- which, to its credit, did its job on GERD admirably.  But it did not stop there..... "Beware brand-new drugs bearing gifts...."

[graham]

Many thanks for all the time and research you put into the post, it really is of great value to me and I will take on board what you say.
You mentioned acid blockers, I had a stomach problem for a few years before the troubles I have been experiencing the last four years. My examination revealed severe inflamation (inflammation) in the duodenum and inflamation (inflammation) where the small bowel meets the large bowel (I could not fit all this into my original question with the letter no. restriction) and was put on Pentasa (Mesalazine 500mg tabs) for six months originally and then again a couple of times after that when it flaired up. Is this an acid blocker and could it have any effect over that period ?

Many thanks again for your concern.

[Concerned lady]

Dear Richard and Graham, and any other interested folks,

Richard, BRAVO, BRAVO, AND MORE BRAVO! Good detective work there!

Graham, get the "paper insert" for the Pentasa (Mesalazine, I believe), and for the Mesalamine, both being aspirin derivative, anti-inflammatory meds, I think. Get the "insert" from the pharmacist who SOLD you the drug (or from any helpful, caring pharmacist whom you know.)

Enlarge the "ADVERSE EFFECTS" section by repeatedly enlarging on a copy machine.

Read the adverse effects carefully. Have a good MEDICAL DICTIONARY HANDY, and also ask your pharmacist EXACTLY what any confusing terms mean, in plain English.

One local pharmacist just told me that SOME of the adverse effects ARE:

abdominal pain and other GASTRO-INTESTINAL PROBLEMS (pretty ironic for somthing that's supposed to help ulcerative colitis, ....)

CENTRAL NERVOUS SYSTEM EFFECTS, such as headache, and ?

Please let us know what YOU find are ALL the LISTED "adverse effects" of this drug.

Also, what OTHER meds are you taking? What are all their ADVERSE EFFECTS, AND POSSIBLE DRUG INTERACTIONS, AND POSSIBLE DRUG-HERB-FOOD INTERACTIONS?

Also do a food and supplement diary, to really know what you eat, from day to day.

Then, I urge you to READ Michael T. Murray's BOOK called: STOMACH AILMENTS AND DIGESTIVE DISTURBANCES, How You Can Benefit from DIET, VITAMINS, MINERALS, HERBS, EXERCISE, and Other Natural Methods (1997).

This book is available at Michael T. Murray's website. He is a naturopathic doc (ND) who seeks to help his patients with methods that don't have bad side effects, when possible!

Murray discusses SOME methods that help SOME patients with Ulcerative Colitis, Crohn's disease, etc., in addition to those with peptic and duodenal ulcers, reflux, etc. TAKE A LOOK! :-)

When the http://www.braintalk.org "Peripheral Neuropathy" forum is again up and running (hopefully soon), check out the thread I put there about alternatives to ACID BLOCKERS, (Aciphex, etc.), so that some people could PREVENT OR REVERSE THEIR PERIPHERAL NEUROPATHY. My sources for these alternatives are listed in that "thread", and include Michael T. Murray's good book!

Rose, over there, has much good INFORMATION AND RESEARCH AND PERSONAL EXPERIENCE about "supplementing" with Vitamin B 12, Vitamin B complex, etc.

If you have a really good doc, who listens, and has an open mind, I'd like to know his or her responses to Murray's ideas.

Then, you'll have DECISIONS TO MAKE about WHAT TO DO WITH YOUR OWN BODY! You can make your decisions based on what your doc says, AND based on what YOU think.

You can keep your doc informed of your actions, and you can continue to be monitored to see what progress you make, as a result of any of YOUR DECISIONS about WHAT TO DO WITH YOUR OWN BODY!!! You, not your docs, will live with the consequences.

Good luck to all!

Sincerely, Concerned lady

http://cantbreathesuspectvcd.com
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[patches748]

just another thought...have you ever been checked for helicobacter (h.pyhlori?  I have both that and also have been on acid reducing drugs steady since as early as 1995 and off and on since as early as 1981.  Both can affect your ability to absorb B12.  I am still having a great deal of problem with the VA listening to me but hopefully with the appointment I have with the neurologist they can get to the bottom of why I have a very high homocysteine level (45.9 with norma being below 12) when I have been getting B12 shots monthly for past three years.  I have some very profound changes in ability to think or even hold conversation at times, and vision is getting worse.  Good luck in getting something done for you because it sure is not fair when we suffer permanent disabilities because a doctor or doctors were not vigilant!!

[Concerned lady]

Dear Graham,

I've been thinking about what you wrote, and the light finally dawned! If your duodenum was damaged, then THAT could be WHY you were and are having MALABSORPTION OF VITAMIN B 12, (and probably other malabsorption syndromes, too!!)

If your stomach was not producing "intrinsic factor" (due to lack of acid, for whatever reasons--what might they be?), that could also be a factor in your not absorbing Vitamin B 12.

So, it looks like there are several things you could do (CHECK WITH A TRUSTED, KNOWLEDGABLE & CARING DOC ABOUT THESE, when possible):

(1) SUPPLEMENT WITH EXTRA VITAMIN B 12, ALONG WITH VITAMIN B COMPLEX, and perhaps also with DIGESTIVE ENZYMES, PRO-BIOTICS TO HELP HEALING, ETC. (Make sure that there are no negative interactions between any meds you are on, and these supplements. Ask your pharmacist and any receptive, nice, intelligent, caring docs about this.)

(2) FIGURE OUT WHAT CAUSED AND IS STILL CAUSING YOUR SMALL INTESTINAL AND LARGE INTESTINAL (and stomach?) inflammation & malabsorption PROBLEMS.

(3) REMOVE all YOUR CAUSES OF THE DIGESTIVE SYSTEM PROBLEMS (what were these problems diagnosed as, and what caused them?)AND GENTLY TREAT THE INFLAMED INTESTINES & stomach, so that your intestines & stomach will HEAL, and again be able to function normally.

(a) MIGHT YOU HAVE CELIAC DISEASE? You can empirically find out, by going GLUTEN FREE for several months, and see if you improve! Avoid GLUTENOUS GRAINS, such as WHEAT, RYE, OATS, BARLEY, BUCKWHEAT, and sources of hidden gluten, such as barley containing SOY SAUCES, gravies not made by you, grain alcohol, etc.

(b) Research causes of, and natural treatments for, all the digestive problems you had. Look at some of the books on my reference page (page 9) of my website, at http://cantbreathesuspectvcd.com

(c) Consider checking in with other specialists, such as ENDOCRINOLOGISTS (CHECK YOUR THYROID FUNCTION, CHECK INTO POSSIBLE DIABETES, ETC.), GASTRO-ENTEROLOGISTS (FOR DIGESTIVE PROBLEMS), etc.

(d) Consider speaking with a knowledgable NUTRITIONIST, with a "holistic" leaning, about how to greatly improve your diet, to help healing. This includes supplementation.

I wish you the best!

Sincerely, Concerned lady

http://cantbreathesuspectvcd.com
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[graham]

Patches, thanks so much for all the advice. I don't know if I have ever had tests for helicobacter (h.pyhlori) but I will make enquiries to find out.
I'm sorry to hear that even with the b12 treatment your condition continues to cause problems. I really don't know, is it possible that you originally had a high normal b12 level which took so long to get to an area where they would consider it a problem.

If your level was high in the 200's when they discovered you had sub-acute conbined degeneration, I suppose it would suggest it. Has the treatment you are getting increased your level significantly ??

I hope your condition improves soon

Concerned Lady, I wish the people who I have been to see so far had the same desire to find answers to the questions you raise. I honestly don't think I would be in the state that I am in right now. You have clearly put a great deal of time and thought into my problems and I am very, very grateful.

Perhaps my luck is turning, a member of my family has managed to raise interest in my case with people who may have such an understanding. I will let you know how things go.

Many thanks to you both again.
Graham.

[patches748]

I have been getting B12 shots since Feb. 1999 and seem to be getting worse again lately.  Did find out homocysteine level was extremely high but VA refused to test me for methyalonic acid which can be also an indicater B12 is not absorbing right even from the shots.

My brother is a licensed naturopath so have been going to the one he recommended close by to help me alleivate this problem.  I think that it is OK for us to search on the Internet and try to obtain information. I also believe that the majority of us is not doing that so we can run to the doctor and say.......look a new symptom.  Most of us do not want something wrong with us and our energy is spent more in trying to cope then trying to diagnose ourselves,

hang in there,

Lynda

[graham]

Thanks Lynda, I agree with you, nobody is trying to score points against their doctor it's just that it's so hard struggling on day in day out, week in week out etc, with the same debilatating symptoms.

It also seems to me that the longer you have it, and have not keeled over, the less concern there seems to be. I can sympathise with you as you have clearly been down this long road as well.

I cannot understand why they would not want to check your methylmalonic acid when they already know you have a malabsorbtion problem, I know you can get this done directly by a clinic at a cost of $70. The test involves sending a urine sample by post, if you check www.b12.com you can see what you think.

Thanks for all the support and advice, I hope things go well for you.
Graham

[rosiola]

hi everyone. i'm new to all this so please bear with me. i'm having this burning problem in my upper back,my neck, my upper arms,my face,my earlobes and sometimes my chest. i've been to the hospital and they checked my heart and said it was fine. i've been to the dr. on several occasions and he's done some bloodwork and it's all come back normal except thyroid which i'm still waiting for those results. i have been diagnosed with irritable bowl syndrome and gerd and i am taking prevasid for this. my dr. has been treating me for anxiety but nothing seems to be helping! i'm about to go insane. is there anyone else out there that has had these symptoms that can help me? i'm so depressed and i'm going to go nuts if i can't find out what this is. please help! rosiola

[Benedict]

It is so good to hear that someone else feels as crappy as I do.  Not that feeling terrible is a good thing.  It's just so hard when no one else has a clue, and there are no support networks.  I'm suffering something that sounds really similar and thankfully have a specialists apt next week (after waiting for 3 months).  Remember that Drs are only human too and that they don't know everything.  There are heaps of stories out there of the average person (or patient) seeing just the right person or making just the right comment to trigger a correct diagnosis.  All I can say is keep your chin up, and don't give up.  Easy to say, hard to do.  Hopefully my specialist can figure out what's wrong with me and hopefully you can get sorted too.

[allhart]

Lynda & Graham,

Bless your hearts you've both been struggling so hard.  I hope this post is not too late and may help.  Is so hard to have your docs look at your metabolic issues, most are just not trained in that area.  Hope you find the following enlightening:

To help your body to get your homocysteine levels back down:  You'll need to supplement your B-12 shots with folate and B-6 - these vitamins occupy a key position in the remethylation and synthesis of S-adenosylmethionine (SAMe), a major methyl donor in the central nervous system.  Deficiencies of these vitamins leads to a decrease in SAMe and an INCREASE in homocysteine.

And:
Homocystinuria - Nitrogen Metabolism Defect - Autosomal Recessive. Cystathionine synthase defect (either deficiency, or lost affinity for pyridoxine, Vit. B6) ------> buildup of homocystine and deficiency of cysteine.
Symptom: failure to thrive, thromboembolic episodes, fatty changes of liver.
Treatment: Cysteine supplementation, give excess pyridoxine to compensate for lost pyridoxine affinity.

I was journaling my family's inherited disorders and known genetics when I stumbled across this post on Google and thought to respond. Hope you're both feeling better.

[tolga]

A related discussion, hypocondria was started.

[Mmk7489]

A related discussion, Improving my condition was started.