Discussions By Condition: Nerve conditions

does anyone know what this is? please help!

Posted In: Nerve conditions 7 Replies
  • Posted By: cherylanne
  • June 5, 2007
  • 10:31 PM

about eight months ago i woke up and got up to go to the bathroom. i fell on my face because my left calf and foot were suddenly gone. er doc ruled out a blood clot and told me to call my pcp. by nine am my right leg started to go. i had a spinal mri and it was reviewed by two docs who said i had degeneration but it wasn't serious enough to account for the leg issues. back to my pcp who sent me to a neuro. i am positive for hsv and epstien barr, my crp and ige are both high. my brain mri was negative for lesions so he explained away the weird lab results and suggested i have conversion syndrome (all in your head) i completely disagree, when something is really wrong you can tell. when i saw him again for follow up he finally started being concerned because my left leg weakness and foot numbness is progressing faster than the right and he is considering bracing my leg so it doesn't give out and dump me on the floor. i have also lost the achillies reflex in both feet. now i have developed chronic urticaria (hives) and the itch is driving me out of my mind! my pcp says its stress but i think it is related to whatever is happening to me. i've had much more stressfull times in my life before and have never experienced anything like this. i also have vertigo and dizziness and intermitten eye focusing problems. my pcp gave me prednisone for the hives but as the dosage was decreased it started to come back. i am now on a second longer round of prednisone but it doesn't seem to help as much as it did the first time. i have a referral to an allergist in a month. in the mean time it's getting harder to walk. i have noticed a pattern of severe fatigue for a few days right before the numbness progresses and i can tell where the new hives will pop up before they even show. i'm at my wits end, does anyone recognize any of this?

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7 Replies:

  • Most of this sounds very familiar, except for the hives. Those were only occasional. I used to have most of those symtoms and a lot more. It was all methylb12, adenosylb12 and methylfolate deficiency. I posted a symptoms list http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=42 Take a look. Read my experiences and see if you think it could be.
    Freddd 3576 Replies Flag this Response
  • hi freddd, thanks for your reply! it's nice to know i'm not alone even if i still can't figure this out. all my vitamin levels came back fine. no anemia either. elevated IGE, CRP, positive EBV and HSV antibodies. i just started seeing a physical therapist and i am now loosing all the reflexes in my feet. the tingling is starting to show up in my fingers now also. if the same pattern continues my fingers will probably be numb in a couple of months. despite the prednisone my urticaria seems to be getting worse lately. no food allergies or celiac disease. i read that demyelinating lesions can reverse enough in periods of remission enough so they will not show up on an MRI but not enough to fix any damage that has already occured. i beleive i have some sort of demyelinating autoimmune disorder or posibly more that one issue and with symptoms overlapping nobody has been able to decipher the problem. diabetic neuropathy has also been ruled out. there is a lot of diabetes in my family but it has been ruled out on me. back to the drawing board! thanks to all who have taken the time to read this, sometimes i feel very alone and frustrated.:confused:
    cherylanne 13 Replies Flag this Response
  • Hi CherylAnne, There are NO TESTS than can tell you that you are not having severe symtoms from b12 deficiencies. Serum level warning point is so low that lots of people are symtomatic for the minimum plus another 800 or so, up to 5x the level set as an alert. The level is set so low as to be meaningless except to tell you when you are really really bad off. Homocysteine and MMA indicate a specific biochemical deficiency (1 each) out of the hundreds of possible things going wrong. A lack of those 2 markers (about 1/3 of 1%) does not indicate a state of sufficiency and freedom from symtoms. Methylb12 deficiency can cause imune systems malfuctions and is supected in autoimmune diseases. B12 deficiency causes dymyelination. Suffient methylb12 with cofactors and omega3 oils also are connected with remyelination. Loss of reflexes in feet can also be methylb12 deficiency. I bet that you are loosing position sense in some or all your feet at times. I go in and out of being able to feel where my little toe on on my right foot and the right side of my leg happens to be. Sometimes it just isn't there and I have fallen. That also is part of b12 deficiency. What about vibration sense? Has anybody held a tuning fork to your feet in various places, not just for a second but for 10 seconds each place? I think that perhaps this is the drawing board you are looking for and have been much to quick to dismiss it. Go to that list of symtoms. Mark down all of the ones you have or have ever had because some of these are progressive and are not all present as once. I had over 70 at one time and more than 100 over my lifetime. My docs all wanted to believe that I had 5-15 different disorders all at once from 5-15 different causes. Not one of them thought that I might have only 1 or 2 primary causes instead of 5-15. None of them could conceive of one disorder with 70 symptoms active all at once. I was even told that "You have too many symtoms to be believable". Everything was done to blame me for their inability to figure out what was wrong. This is often true of b12 deficiency that does not present with anemia. The typical doc probably manages to diagnose 1% of those who could benefit tremendously from methylb12. I saw more than 150 medically trained persons over the years incuding 4 or 5 dentists and maybe 30 hygienists all of whom had been trained to recognize the specific oral symptoms I used to have for decades. THen there are the neurologists, neurosurgeons, internists, ENT, Urologist, gastroenterologist etc etc etc all of whom failed to recognize what was really going on. All they could see were the symptoms, not the cause and they always looked in all the wrong places for the causes. It's All In Your Head was the same diagnosis I received from a lot of docs as they tried to convince me that there wasn't anything wrong an antidepressant wouldn't help. They didn't. Everything kept getting worse. After about 25 years of this even the most persistant IAIYH docs had changed to "Something is going on but I don't l know what." I found a picture of myself from 30 years ago on my 1977 season pass from Alta,Utah. That was a very emotional experience. That was the last year I was well enough to have a season pass. That was the peak of my recovery from the 1972 car wreck. That was the last good year before everything started down hill for the next 26 years. The neuro pain started getting worse after that and the fibro started. By 1982 I couldn't cope with the physical demands of selling insurance. I feel the best now that I have in about 30 years. The only way for you to know if methylb12 and cofactors could completely turn your health around is to try it. For the symptoms you have the effects would not be subtle and would start appearing within minutes to hours. Progressive neuropathic symptoms in BOTH legs and BOTH hands is considered one of those hallmark symptoms of methylb12 deficiency. In regard to the matter of a b12 trial, one should give it a trial no matter what the test results say because negative test results do no predict the lack of a strong response to methylb12. What if 95% of all your symptoms could be better in a year but that there is no test at all that can tell you that except trying the stuff? That is the case now. You will know quite well by the time you finish a bottle of 100 methylb12 and 100 b-complex. (hopefully with zinc, a,d,e,c,magnesium, all cofactors also) whether it does any good at all. The risk is $40 worth of vitamins over 3 months to see if you could be well. The effects are not subtle. If they work nothing will be able to stop you from ordering more. If they don't work, it's just one more wrong theory just like all the rest. If you wait 20 more years to find out until your body is a total wreck and you find out it would have helped I would bet you would have regrets. Anyway, best of luck in your search for answers in this game of "you bet your life".
    Freddd 3576 Replies Flag this Response
  • well, i gave the vitamins a shot but nothing changed. my left hand is starting to go tingly and numb and the leg weakness is creeping up to my lower thigh now. i'm waiting for a bunch of bloodwork results to look for rising inflamation levels. i am also waiting for a skin biopsy because the hives have gotten really difficult to control and don't even look like hives anymore, it looks like puritis. i was discharged from my physical therapy program because the muscle weakness and numbness make it impossible to make any headway, it just makes things worse. i have started having muscle spasms and cramping so severe the muscle gets rock hard. i have also started having intermitten deep joint pain in my knees, shoulders and hips and it's getting harder for me to walk and i fall about three times a week now. all i do know is that i am getting very discouraged, i'm sick and tired of being sick and tired. i wish someone recognized this because i am at my wits end. this is not im my head and i'm tired of that implication from some doctors when they can't figure out what is wrong. i have a lot more respect if a doctor can admit they don't know what is wrong.
    cherylanne 13 Replies Flag this Response
  • Well I'm not sure where to start. I have all these symptoms. 18 months of every doc you can thing of. A worthless trip to the Mayo Clinic. First off my two biggest complaints where the sores itchy to say the least. Covered at times from head to toe. Sores that dn't heal. Second biggest thing was my legs hurt. Well with that said Mayo said you need a rectal. Oh my God what the ***l is wrong with these doc's???? I can home had left side paralizsis went to my favorite doc. He is an Enviormental and Occpational Doc One of the top four in the country. He freaked out and sent me to ER. He ordered to MRI's of my back and they found 11 herniated disks in my back. I forgot about falling off a dumpster four years ago. OK I ran a restaurant. I could talk for hours about the test they did and how scared they made me. Oh the phone, email me @ loiskerr@comcast.net. We can chat there. Lois :D
    loiskerr 29 Replies Flag this Response
  • To Fredd,Thanks for the great information on B12 def. I have it since I've been a vegetarian for over 10 years and no knowledge of supplements. I'm experienicing neurological symptoms and just saw a hematologist who is vey knowledgable on the subject. My problem is that the best treatment is methylb12 injections but my doc says he cannot get it for me. He said it isn't available in the US, but I find it in our labs. I don't get it? Anyway, you wrote saying CherylAnne should try methyl b12 and b-complex. Would you please tell me the amount of mgs. needed? Thanks so much!!!Phyllis
    Anonymous 42789 Replies
    • November 14, 2007
    • 10:37 PM
    • 0
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  • Hi Phyllis, University Pharmacy in Salt Lake City is a compounding pharmacy that can supply you methylb12 injectiable solution in 10mg vials with a doctors prescription, a little more than $100. That is 50 injections of 5mg. You can inject subcutanous with those 0.3ml 5/32" 31 gauge insulin syringes. You can experience the effects of a methylb12 injection with a 25 to 50 mg sublingual dose of Jarrow Methylb12 5mg. The sublingual absorbtion rate with Jarrow 5mg methylb12 appears to be 10-15% or maybe a bit more in some people. Most folks will do quite well in a 5mg tablet a day sublingually. Five of us performed tests and the Jarrow and Enzymatic therapy brands of methylb12 were by far the most effective of 10 brands tested with 100% agreement of the 5 hypersensitive testers. Jarrow B-Right b-complex is excellent as well. Don't forget the other cofactors for healing as well; zinc, C, E, A, D, omega3 fish oils. Also many folks are also helped by the addition of the other natural b12, adenosylcobalamin (Country Life 3mg also tests excellently).
    Freddd 3576 Replies
    • December 17, 2007
    • 06:39 AM
    • 0
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