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Avatar universal

Worsening unexplained symptoms

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 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 ?  
31 Responses
Avatar universal
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
Avatar universal
Your symptoms seem to suggest a systemic problem as opposed to a localized lesion or other focal cause.  It  may be significant that you have tingling or paresthesias in your face and vision disturbances as well as problems in all extremities.  Do you consume aspartame (Equal, Nutrasweet) in diet sodas or any other "sugar-free" products, and if so, with what frequency and for how long?  You should know that headaches and visual disturbances are among the most frequent symptoms of aspartame poisoning.  The product contains three known neurotoxins/excitotoxins, the most dangerous of which is probably the methyl ester, which means you are consuming methanol, precursor to formaldehyde and formic acid.
Avatar universal
Graham, I'm terribly sorry to hear about your problems. It sounds tough. Has anyone said RSD to you? That is Reflex Sympathetic Dystrophy. I'm not diagnosing, but you might ask or look into it.

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



Avatar universal
Sorry for throwing out such an ugly term with no explanation.  I'm no doctor and I didn't intend to sound like I was suggesting a diagnosis. Gads. I was just intending to offer an avenue for information exploration. The term was given to me as an explanation for the intense, burning pain in my feet. It was later amended to general "neuropathy" when it spread to my hands, and I've discovered there are other more current or "correct" names. But when I go out-and-about the web looking for information, RSD is all about burning pain, and it helps me focus my research. Brice
Avatar universal
CCF-Neuro-M.D.-CS, many thanks for your advice, I hope it may help in identifying the cause of my symptoms.

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.
Avatar universal
Have you checked into your circulation?  The tingling and tightness in your legs, blurred vision, etc. can represent circulation problems.  Have you had an echocardiogram from a cardiologist?  I, not long ago, had some issues with weakness and such things and found out that I had a congenital heart defect that wasn't detected until I was 27 years old.  If none of this is feasible maybe consider a pain care dr.  Just some thoughts...best wishes, chad
Avatar universal
You may have a methylcobalamin deficiency just as I DID.  I had 50 years of worsening symtoms and multiple crisis.  This is easy to test.  Buy some sublingual methylcobalamin tablets.  If you have a methylcobalmin (the ACTIVE form) deficiency, you will know within 24 hours by your response.  If you are like me you will know in 15 minutes.  It is harmless and can't hurt you to try it.
Avatar universal
I agree it is not RSD.  (Actually, the current term used for it is Complex Regional Pain Syndrome -- CRPS.)  But that is almost never bilateral, and is almost always trauma-induced.  That doesn't fit your symptoms or history.  BTW, one of the world's experts on CRPS happens to be a Cleveland Clinic physician - Dr. Michael Stanton-Hicks.
     I wish you luck in figuring it out.  It must be very frustrating.
Avatar universal
Does anyone know what happened to BrainTalk website?  I realize this was a help site for many people.
Avatar universal
To Chad, Fred and mysterious stranger- many thanks for the suggestions, I will give consideration to them.

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
Avatar universal
Braintalk is down until the only person who knows what to do to taker care of the server returns from vacation.  JL will probably be back this week and get it running again.
Avatar universal
Thanks for the post about BrainTalk..  I would be more than happy to donate to the site.  The people their are great and I miss them!  Thanks again!
Avatar universal
35 yr old male. Started having a sore arch in right foot months ago. Then one morning I noticed my feet (soles) felt tingly. Next day my whole feet were tingling. Like when a limb falls asleep. Day after that it spread up to my waist symmetrically. Both legs, butt, everything. Been eight days. Now middle of back has a touch along with small amount in left fingers. Blood work was fine along with MRI of entire spine. No cramping, or real pain yet. Feels like someones giving me a wedgie also in my groin/pelvic area. My feet and knees seem so stiff every day. Like they're petrifying. Going for a Nerve conduction next wed. I researched on the web and think I have PN. What else could it be? I have diabetes in my family history. And thought I was Hypoglycemic. I get shakey if I don't eat all thru the day. I've always had a shakey muscle thing as far as I can remember. Like if I hold my arm in a certain position while trying to hold a small object. Everyone dismisses it. It comes and goes. But like I said blood shows no diabetes.
Avatar universal
OK, you added a symptom in your upper extremities to your more significant lower extremity symptoms, and your MRI rules out lower spine pathology.  So, you are correctly thinking of a systemic problem, and peripheral neuropathy (I assume you mean, when you refer to "PN") is a somewhat general but probably not inappropriate term for what you are describing.
    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?
Avatar universal
Aspertame? Never use sugar or sweetners. Could it be I pulled something or pinched a nerve? I was doing sit-ups once and awhile before it happened. Last nite I discovered I have Lhermitte's sign. Chin to chest sends a weird shock to my rectum and back of legs. I'm learning all kind of new medical terms...my perineum has serious pressure. Pudendal Neuropothy? But how does that explain my fingers. Lhermitte's sign is sometimes associated with MS but my MRI was neg. I have no muscle or reflex problems it feels like my skin is super sensitive. I know I'm jumping all over the place. Just trying to figure it out or tie it all in. Awhile ago I had a ultrasound on my neck cause I feel something on the left side not pain, lump, or discomfort maybe a build up of tissue. And I had my prostate checked awhile ago for some weird testicle pain. Both accounts showed zip! So far its not spreading like at first seems to have stopped once it reached my fingers. What my family doctor tested for I need to find out. Took a lot of tubes of blood. I know Diabetes, R. Arthirtis, B12, Thyroid. I told her Hypoglycemia but not sure the abbreviation on the script for that. I'm gonna try to get to a neurologist asap. So far I could only get in in 2 weeks.
Avatar universal
IM VERY SORRY TO HEAR ABOUT YOUR CONDITION. MY MOTHER HAS BEEN ILL WITH QUITE SOME TIME SHE IS 46 YEARS OLD NOW. SHE HAS DEVELOPED AS YOU SAID TINGLING SENSATIONS IN HER HANDS BOTHE HER LEFT AND RIGHT. SHE HAS ALSO DEVELOPED NUMBNESS AND BURNING SENSATIONS IN HER FEET. SHE HAS BEEN TO NEUROLOGISTS, ENDO AND ALL OTHER DOCTORS AND HAS HAD MRI'S NERVE CONDUCTION TESTS FULL BLOOD WORKS AND NOTHING HAS SHOWED UP. SHE GOT DIAGNOSED THE OTHER DAY WITH CARPEL TUNNEL SYNDROME IN BOTH HER HANDS BUT I AM SERIOUSLY DOUBTING THIS AS SHE HAS SIMILAIR SYMPTOMS IN HER FEET. sHE ALSO GETS SWEELED JOINTS AND BODY ACHES. SHE WAS DIAGNOSED WITH CHRONIC FATIGUE SYNDROME A WHILE BACK AND ALSO FYBROMAYALGIA, BUT SHE SEEMS TO BE GETTING WORSE AND WORSE. WHEN I SAW YOUR COMMENT I RELATED STRAIGHT TO MY MUM. aLL THE DOCTORS SHE HAS BEEN TO NOONE AND I MEAN NOONE CAN SHED ANY LIGHT ON HER CONDITION. I THINK IT IS GETTING TO THE STAGE WHERE THEY THINK SHE IS MAKING IT UP ..WHICH IS NOT THE CASE.IF YOU CAN SHED ANY LIGHT AS TO WHAT DOCTORS MAY HAVE TOLD YOU I MIGHT BE ABLE TO RESEARCH INTO SOME NEW OUTLETS AND TRY AND FIND OUT WHAT THIS MYSTERY ILLNESS IS THAT IS RUINING HEALTHY PEOPLES LIFE. I HOPE YOU ARE FEELING BETTER ANYWAY. I KNOW HOW IT IS TO BE IN THIS MUCH PAIN I HAVE SEEN IT FOR THE LAST 10 YEARS OF MY LIFE.
Avatar universal
The mystery disease plagueing my life and would have plagued my childrens'and many others is severe methylcobalamin deficiency even while taking lots of cyanocobalamin.  When I got colds it went to my lungs for a monthy or two.  When I got hurt I developed chronic pain.  I have bilateral neuropathies from head to toe.  I was always the one asked "Of all my patients why don't YOU get better?".  The severe crisis with severe dizziness on wakeup continuing for days, vomiting great gobs of mucus, severe headache and stiff neck, fatigue such that I can hardly move my body.  Severe muscle pain.  Spasms all over.  Immensly painful burning red tongue that starts with "scalded" feeling places.  Mucus by this time is abnormally thick and sticky instead of thin and slippery.  The quantity produced increases vastly at least in the lungs.  One must do a lot of intense prodctive coughing to keep from having problems.  I've had a bunch of times that I wasn't effective enough and had a half dozen pneumonias.  

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.
Avatar universal
I had surgery on April 2,2003. I was given Levaquin for some sort  of an infection. I have had oral thrush ever since I took the antibiotic. I have pain all over my body. My legs from my knees down are red and very painful in the morning when I get out of bed. I have taken 3 bottles of nystatin - mycelex- and diflucan and nothing has worked. My tongue is covered with yellow and white masses that I cannot scrape off. My tongue is very sore.. I also have pain in my hips and my hands and feet are swollen and tingle and burn..Does anyone else know what can be done. I also am on Paxil cr 12.5 -1 per day and lorazepam 2mg. 1 at night for sleep. My skin is inflammed and hurts to touch it.
Avatar universal
Levaquin? I too took that a little while ago. I stopped cause I ran across a website listing horrible side effects. It is a newer metal based anti-biotic. There was a drug rep at the doctor's office handing out Levaquin like candy. It was very strange. Maybe a link?
Avatar universal
In response to your situation I have had the same symptoms for the past 2 years. I am almost 100% positive that I have fibromyalgia, and or Lupus. My ANA has been + for the last year, my muscles and joints ache continously, I am extremely fatigued, and my feet are always numb. Yes my physician thinks that I am  crazy. Thay can make mistakes too. When will they ever listen to the patient? We don't want to be sick and feel lousey, I'd give anything to know just what's wrong and feel good again. I love life, and I'm too young to be a couch potato.
Avatar universal
Freddd, wanted to give my greatest thanks for your post on Methylcobalamin. Went researching it your first post and decided it was worth trying for my RSD/CRPS/PN (whatever you want to call it).

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.
Avatar universal
Hi, I am a 35 year old female.  I do smoke unfortunately and am over-weight but this doesn't seem to be the worst of my problems.  

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.
Avatar universal
Based on my 55 years of previous existance experience and the past 9 weeks of LIVING with the methylcobalamin, there isn't a single neurological diagnosis or symtom that I wouldn't try methylcobalamin for.  And so far, the only effective brand for us is Enzymatic Therapy Bioactive B12.  We (me and local hypersensitives) are starting testing on another brand this week and results will be posted.
41502 tn?1223517053
in the 80's when I was in my early 30,s i started haveing all kinds of symtoms. severe stomach pain, severe headaches, and severe back pain. i was hospitalized 3 days with all kinds of tests.nothing was found. i went to chiropracters,allergists, and regular dr.s. i would lie in bed, and was sure i had a life threatening disease.finally i went to dr william crook who was a local allergist.he has passed away,now but he wrote several books on yeast syndrome. after 6 months of diet and nystation all these bizarre symptoms disappeared. his first book was The Yeast connection, it s worth a try.I understand there are dr s nationwide using this treatment now,
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