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Neurology (Expert Forum)
Worsening unexplained symptoms
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Worsening unexplained symptoms
by graham, Jul 02, 2003 12:00AM
My symptoms started five years ago, tingling in lower legs and occassionally arms/hands and feeling tired. Initial neurological tests were normal. I now have constant tingling and painful burning in my lower legs and feet, tightness in my lower legs and my feet are tender and sore to stand on. The outside toes on my right foot spread out, particularly my small toe.
My muscles tire so easily and my fingers, which are steady when held still, tremble when moving them. I developed tinnitus not long after my original symptoms, which is very loud all the time. Hearing tests recently showed distinct hearing loss on my left.
I feel slightly light headed a lot of the time, eyesight sometims blurry and mentally tired.
The only problems I had before these symptoms was swelling in my lower abdomen. A colonoscopy and endoscopy showed severe inflamation (inflammation) in the duodenum and where the small bowel meets the large bowel.
I moved GP three years ago and was sent back to the same neurologist who now found I had reduced reflexes in my ankles, nerve conduction tests showed abnormalities in the common peroneal (spelling?) nerve territory in right leg. Thermal foot studies also showed abnormalities. No diagnosis except possible chronic fatigue syndrome.
My vitamin b12 was 289pg/ml in 98, 197pg/ml in 99. When I moved GP in 2000 tests showed 192&189 pg/ml. A schilling test was normal in 2000, and after being injected twice with b12 for the test, my level was 287pg/ml three months later. Seven months later it was 235pg/ml,last test Dec 2001. Could b12 be a factor or any other explanation ?
My muscles tire so easily and my fingers, which are steady when held still, tremble when moving them. I developed tinnitus not long after my original symptoms, which is very loud all the time. Hearing tests recently showed distinct hearing loss on my left.
I feel slightly light headed a lot of the time, eyesight sometims blurry and mentally tired.
The only problems I had before these symptoms was swelling in my lower abdomen. A colonoscopy and endoscopy showed severe inflamation (inflammation) in the duodenum and where the small bowel meets the large bowel.
I moved GP three years ago and was sent back to the same neurologist who now found I had reduced reflexes in my ankles, nerve conduction tests showed abnormalities in the common peroneal (spelling?) nerve territory in right leg. Thermal foot studies also showed abnormalities. No diagnosis except possible chronic fatigue syndrome.
My vitamin b12 was 289pg/ml in 98, 197pg/ml in 99. When I moved GP in 2000 tests showed 192&189 pg/ml. A schilling test was normal in 2000, and after being injected twice with b12 for the test, my level was 287pg/ml three months later. Seven months later it was 235pg/ml,last test Dec 2001. Could b12 be a factor or any other explanation ?
Doctor's Answer
by CCF-Neuro-M.D.-CS, Jul 03, 2003 12:00AM
Please remember that I have not had the opportunity to evaluate you personally, and therefore can not make an accurate clinical diagnosis. That being said the symptoms which you are describing within you extremities could be related to a peripheral neuropathy. A peripheral neuropathy is a dying back of the nerves. There are many causes for peripheral neuropathy including: diabetes, B12 deficiency, thyroid disease, and auto-immune/inflammatory disorders to name a few.
The normal range for B12 varies from institution to institution, but certainly some of your B12 levels are low and others are borderline. When patients have low normal or borderline B12 levels it becomes important to check other markers of B12 function such as methymalonic acid, and homocysteine. Folate levels should also be checked. B12 is absorbed through the digestive tract by combining with intrinsic factor which is made in the stomach, by parietal cells. Anti-intrinsic factor and anti-parietal antibodies would be interesting to check, to rule out abnormalities.
Ihope these suggestions help. If not, a consultation with a Neuromuscular specialist (typically found at academic hospitals) may be helpful. Good luck
The normal range for B12 varies from institution to institution, but certainly some of your B12 levels are low and others are borderline. When patients have low normal or borderline B12 levels it becomes important to check other markers of B12 function such as methymalonic acid, and homocysteine. Folate levels should also be checked. B12 is absorbed through the digestive tract by combining with intrinsic factor which is made in the stomach, by parietal cells. Anti-intrinsic factor and anti-parietal antibodies would be interesting to check, to rule out abnormalities.
Ihope these suggestions help. If not, a consultation with a Neuromuscular specialist (typically found at academic hospitals) may be helpful. Good luck
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Do you still have stomach ailments? That's a common thread for us RSD'ers. You might try avoiding all dairy for a few days and see if that helps any.
I've also been wearing surgical masks and that has helped eliminate the light-headedness and blurry vision.
Avoiding stimulating my effected regions has been the biggest help. I use a wheelchair when my feet burn a lot. The doctor was against it at first because of the possible loss of muscle tone, but I knew the pain wouldn't go away if my feet were aggravated. I kept the pain minimized and the RSD did go into remission for about 6 months after I got my first B12 shot. I've kept those up every month. The pain would start, I'd get a shot and the pain would be gone by morning. And my level was always in the low "normal" range. They're saying to check the folic acid level too.
Good luck with this, and I hope you get lots of suggestions and that something will help.
Brice
Mysterious Stranger, I don't generally drink diet drinks or take artificial sweetner with tea etc. As for as aspartame in other food sources, I don't really know but I will give it some thought. Many thanks for your consideration.
Brice, I had never heard of RSD but had a look at the condition. From what I can gather it seems that the condition can result after some form of impact type accident. I don't recall anything along that nature prior to my symptoms starting in 97/98, but many thanks for taking the time to give my condition some thought.
Unfortunately yes, I still have stomach/bowel problems more or less on a daily basis (swelling and discomfort)
I hope you are coping well, from what I read I know it must be difficult dealing with your condition also.
Best of luck to all
Graham.
I wish you luck in figuring it out. It must be very frustrating.
You are so right MS, five years of frustration does tend to wear you down. I have been referred for further neurological opinion, perhaps I might get to the bottom of this yet.
Many thanks again
Graham
Your description of symptoms seems to indicate whatever it is is becoming worse. You do sound like you may be hypoglycemic (have you been tested for that), and not diabetic. How old are you? Are we looking at juvenile or adult-onset diabetes, and have you had insulin blood tests and a glycosalated hemoglobin test to be sure you are not diabetic? Diabetes does often lead to PN, as you seem to be aware.
On the assumption you really are not diabetic, have you consumed aspartame (Equal, Nutrasweet) and if so, how much aspartame-containing product do you typically consume in a week, and for how many years have you consumed the stuff?
These are the most severe crisis conditions. Some people are also psychotic by this point. Others depressed.
When I put that methylcobalmin under my tongue my consciousness itself started changing. In one hour the severe abnormal fatigue of 15 years was GONE. The specific pain with that fatigue was GONE. A nearly lifelong depression was GONE. I had a few glimpses of some months duration when I was taking a lot of liver extract tablets. If this kind of living under the shadow of a mystery illness sounds familiar, this one appears pretty common. Half the people we know have it to some degree or another.
Anyway, I'm still functioning and going to work while my RSD friends across the country are suffering horribly as I did last year. The Methyl makes a difference in keeping the pain level down. I?m taking over 20mgs/day now. My neurologist is satisfied this is safe and ok until we find out why I need it. Does anyone have any ideas?
My greatest THANKS KUDOS and BEST WISHES, Freddd.
My understanding is that RSD/CRPS is NOT rarely bilateral. I chat with a lot of folks who have this. It spreads MOST of the time. Mine spread from one foot to two the first year then to both hands the next year (this year). The label was changed from RSD to PN, but PN doesn't convey the pain level or type as clearly. My "injury" was kicking my bed one night and having a bruise the size of a quarter. Some injury.
It is great information for everyone about RSD/CRPS/PN. I know not all peripheral neuropathies are RSD, but the intense burning pain is what it is all about.
I?m sorry I don?t have info to help with anyone else's symptoms. I'll keep you all in my prayers, though.
Nearly 2-3 years ago I started developing a lot of symptoms. Terrible burning pain in my feet that made me nearly cry just walking out to my car after work. Pain in my neck, shoulders, back, and hips. I had severe numbness in both my hands and had carpul tunnel release on both of them. It took away the majority of the numbness and pain but I still get a weird fuzzy feeling in the last two fingers of both hands.
Now things are getting worse. When I yawn or turn my head the wrong way I get a severe pulling in my face down through my collar bone. It even swelled my right side of my face including my eye.
I wake up at night struggling to breathe, I toss and turn all night in pain, sometimes a severe twitch wakes me up.
I need to know whats happening to me, its making it very difficult to do my job (assembly line work) which I make good pay and can't afford to quit.
My family doc said I may have RA and sent me to a RA doc who blew me off and said I needed to file workers' comp. on my problems with the carpul tunnel, and possible bursitis in my hips before he would treat me. I had an EMG done which confirmed the carpul tunnel but also revealed a pinched nerve in the C6 of my spine, which my family doc has been ignoring and my orthopedic doc did the same.
I can't take the pain and aching anymore. I'm depressed a lot and sleep very little. I try twice a week to aquacise to get some of the weight off but as a virtual couch potatoe, it's not helping.
I also was diagnosed in the ER with a low blood flow to the front of my heart (whatever that means) and was admitted into the hospital for 3 days for observation. They did stress tests and a CT and ruled out heart disease.
Please help, what is going on with me. I'm 35 but feel 80.
This brand, Jarrow, also has a multi vit and a bcomplex with methylcobalamin instead of the more usual cyano. I am looking at completely removing cyanocobalamin from my supplementation. In addition it has the P5P version of vit B6, the active version.
I was searching the net for my symptoms and came across all your posts.
I am a 60 year old active grandmother and recently moved into a smaller home. I packed 40 boxes before the move and wrapped and taped them all. While doing this I was suffering with an upper respiratory cold of which Z-pak took this away. I had more energy than a 30 year old until I moved into the new home.
I got the upper respiratory again and parotid gland swelling (salivary gland) I sucked on sour balls and got that quieted and started on Cefzil for the new cold. I then started having horrid left shoulder/neck pain and could barely move my head. After 4 Cefzil's, I started tngling in the bottom of my feet and then my hands and then up my legs. I dropped everything I touched as there was no strength there. My arms felt like lead and i still cannot lift anything. The back of my head feels like a bowling ball and my vision is blurry. All the Advil, Aspirin and Ibuprofen cannot touch this pain. Actually the weakness is the scary part and the pressure in the back of my head.
After 3 weeks of this mess, I saw my Internist who is like Becker on TV.......He said, "you have post traumatic stress syndrome" from leaving your old house and moving into something new.
He really had me believing all this rubbish.
He ordered plain c-spine x-rays and a CBC, TSH, Smac Test and a B12 test. He had given me a shot of B12 right before the B12 serum tests was done...Duh! No wonder it showed 1450. Mine is usally in the low 200's.
I waited 18 days for this man to call me. Finally I received in the main a hand written report stating all blood work was normal. No numbers listed except for the B12. The C-spine he said was slightly irregular.
Yesterday, I marched into his office and asked for a SED rate, Rheumatoid, ANA, and more extensive Thyroid tests and a C-reactive protein test looking for inflammation.
My hubby had called a Spinal orthopedic doc by this time.
I also picked up the plain spine films and the report reads: Moderate narrowed disc in C 5-6 with possible foramina narrowing L + @ C5-6. Vertebral bodies perserved.
I do not know what all this means but on Wednesday I hope to know.
Yes, i am scard to death as how can one be so with it before moving and falling apart after moving. My hands feel like rubber and the pinkie fingers are freezing as are the left toes.
If I sit too long I pay the price. if I put my head back..i pay more. Personally I feel I have an infection in the nerves or muscles that the viruses caused or the Cefzil did something to me. (bad reaction?) Not sure.
The doc finally admitted yesterday that he is now concerned and perhaps I should see a neurologist. He mentioned Gullain Barre, Spinal Stenosis and PolyRheumata with Temporal arteritis.
I hobbled out of his office and could barely drive the 45 minutes home. Yes, I have something. I think if I were not a female, i would of been taken seriously 3 weeks ealier. Post traumatic Stress Syndrome...My FOOT!
I am buying the B12 supplements tomorrow. Perhaps this will help and buy me some time until I see the Spine Ortho doc next Wednesday. Perhaps i should of gone to the ER room when all this started but then again, i am female and females are not believed well. Then on top of the physical woes....the female suffers the mental anquish.
I wish there were no sickness in the world. Too many nice people are suffering.
Everyone please have a nice week-end. You are all in my prayers.
Now as to ideas. I am in the same boat as you on this. According to most of the more popular theories about B12 and how it works say that it shouldn't be happening the way it is for us and many others. It won't be the first time some therories are incorrect about nutrition for anybody that has watched it the past 50 years, like the fat advice of the 60's making artery deposits worse. I have done many hundreds of of hours of reading and I will mention my ideas on the WHY it could happen. I have a technical article aimed at docs I can send you on how to test so as to probably find the cause of the problem. The interesting thing about the testing is that no matter what thousands of dollars worth of testing end up saying about where the absorbtion or conversion go wrong or not, the answer is the same. Supplement. And that is the only way to really tell. A person can be dying from the deficiency and test "above normal" in the commonest test of B12 serum level. A urine MMA and a serum homocycteine test can tell you funtionally as to whether b12 is acting as a methyl doner. High homocysteine levels point right at insufficient methylB12.
There are a number of problems with cyanoB12. If a person has liver problems it can't change the cyanoB12 to methylB12. A person may lack intrinsic factor for aiding absorbtion from oral doses. There are a number of other possible absorbtion problems that various testing can get at. There can be a transport problem.
If you stop and your symtoms come back quickly, within a few days or weeks, then a different scenario is hypothecized. The liver supposedly stores B12. If the liver is chock full of cyanoB12 from years of supplementation ( as I have had) and a person is sensitive to day to day blood fluctuations despite a period of methylb12 supplementation, then the problem appears to be that the person can't convert the cyanoB12 to the active form, methylB12. With the liver full the person may never be able to build up their supposed 5-7 year supply in the liver of active methylB12. It's blocked by inactive cyanob12.
Jarrow has both bcomplex and multivits with methylB12 if one is intent on removing cyanoB12 from the diet. Those alone for someone in my position are not enough as I find increasing benefit at least up to 10mg a day. Those vits also have the active coenzyme version of B6, P5P. Good luck.
I have waited for 55 years for the docs to find the answers. When I read all the things I did I decided not to wait weeks and get tested. Instead I performed and iommediate pragmatic test and drove out a rush hour to buy some. 1 hour after I got home the lights came on and I have been totally changed by this vitamin.
Good luck Minnie. Let us know if and how it helps.
MinneM, have you considered that there could be an environmental condition in your new house that is affecting your health? Every symptom you mentioned can be caused by allergens. Check for mold in any age house. In older homes, as building materials age they can let off fumes that some people are sensitive to. Hope this gives you a few ideas for further research.
Freddd, healthboards.com Sorry I didn’t respond earlier. Will keep better watch. Easier to chat at healthboards, though. I hang out on the RSD page.
Interesting that you specifically mentioned Enzymatic Therapy B12. I was using KAL and and Nature something-or-other and both worked fine until I bought out every bottle in town. The only option then was to get the much more expensive Enzymatic Therapy. Instantly I could tell how much more effective it was and my body never responded to the other brands again.
Unfortunately my body has kept needing more and more B12 to keep the pain in check. I finally couldn't keep up with it any more as my tongue was reacting painfully to each tablet. This happened at about 35 a day. I had to cut way back. Not sure what to do now. Not sure why this increasing need happened. Could there be a bacterium somewhere that is feeding off the stuff, keeping it from me, and causing the neuropathy? Have you looked into the Ecoli 0157 research?
I have found there IS a "flora" that will thrive on excess B12 (that's any amount over 1-2mg/day). Gad. Been feeding the local plant life.
Cutting back hasn't been too bad. I think maybe because I've gone gluten free. I'm hoping at least. Slowly.....getting.....better......
Did you get the ref. to healthboards dot com? Posted it somewhere up above on a thread for you, can't remember where, guess it doesn't matter. I hang out over on Reflex Sympathetic Dystrophy. It's a great site and great community of folks. Hope to see you there.