post-viral peripheral neuropathy?

[Doug]

Dear Drs,

I have some more questions about this post-viral thing, and I apologize in advance for the length.  I am a thirty year old male who used to be in exceptional health, very active, running ~15 miles a week, hiking, weight lifting, and rock-climbing.  Never had a neurological problem before, ever.  On Sept. 16 of this year I began to feel like I was coming down with a cold/flu.  Thus began three weeks of one of the strangest infections I

[steve]

Doug 2 years ago my symptoms were exactly like yours and had progressed.  My fasciculations were extreme, developed terrible headaches, duodenitis, GERD, elevated liver enzymes (Cronically)and blurry vision.  All my symptoms fluctuate and get worse at night.  Despite only an equivocal lyme  test I started antibiotics about 3 months ago, initially had a bad reaction and more recently have had my first month of feeling pretty good in a long time.  I was also very active and due to pain had to stop training for over a year (the first yr or so exercise helped me as well).  I finally have started training again (very important to me, I didn't think I would ever train again). Serology has not yet confirmed a lyme diagnosis, but longer term antibiotic treatment does appear to be working.  I had given up hope and did not believe antibiotics would work because my lyme test was negative.  I am on 300 mp of doxycycline daily and for the first time have been able to stop taking other medications (protonix and klonopin). It appears I either have lyme or some other antibiotic responsive bacteria.   do not know and as long as I am getting better, do not really care.  Best of luck to you.  I replied because your symptoms sound EXACTLY like mine did 2 years ago (everything including the tremor which is now extinct). -steve (***@****)

[sue]

CJ, thanks for all of your responses. I am seeing both the neurologist and the diagnostic specialist tomorrow at our local Children's hospital and this gives me one more question to add to my list. I figure the more info I can get the better and eventually this will lead to some conclusion.  I will keep you posted.  I will just never accept the "all in the head" answer.  I am amazed how many others hear that too. I would rather hear an honest "we don't know, lets keep looking".  

Sue

[Lady Jay]

Lisa-   May I ask:  Did you get the flu in normal fashion or did you take a flu shot?  I ask that question of everyone and most took a flu shot.  

I can't understand why the doctors think this problem is "all in you mind".  They are the ones who don't understand this illness obtained from flu shots and the flu itself because its a "virus".  Viruses "come" and "go".  Some leave another problem in their wake... and it doesn't have a name.  Mine had a name.

I think the Guillian/Barre Syndrome can be weak... or bitter strong.  It numbs and paralyzes some... and causes major weakness, tingling, twitching, eyes sensitive to certain types of light (in both cases) and sometimes double vision (in both cases-mine was horribly undescribable).  All in all, this always seems to appear on the heels of a "cold" or the "flu".  Researchers need to take it from there.   Doctors need to give it a name for now to ease a patients mind.

The worst part is... in every case it has to run its course.  You go into battle by yourself. - C.J.

[Lady Jay]

Sue-   An MRI can't expose a virus in spinal fluid, or anywhere else in the body.  The only way is via a lumbar puncture.  Has she ever had one done?  Keep us posted.- C.J.

[lisa]

I, AM A REGISTERED NURSE, WHO HAS POSTED IN VARIOUS AREA OF THIS FORUM BEFORE UNDER FASICULATION TITLES. THE MORE I READ THIS FORUM, THE MORE AMAZED I AM THAT WE ALL HAVE SUCH SIMILAR, BUT UNDIAGNOSABLE SYMPTOMS. QUICKLY, I WILL TELL YOU THAT MINE PROBS STARTED AFTER A VERY SEVERE FLU WITH BODY ACHES AND THE MOST HORRRIBLE NOC SWEATS-DRENCHING MY CLOTHES 3 X A NOC. 1 MONTH LATER, ALSO AFTER A SEVERE FALL, AND BEING ON AN ANTIBITIC FOR A UTI, I DEVELOP TINGLING IN MY FINGER TIPS AND TOES OF ONE FOOT. I WOULD LITERALLY GET UP IN THE MIDDLE OF THE NOC AND PUT MY HANDS UNDER COLD WATER BECAUSE THEY FELT AS IF THEY WERE ON FIRE AND IT WOULD KEEP ME AWAKE. BEING A NURSE, I HAVE NEVER HEARD OF ANYONE WITH A STORY LIKE THIS UNTIL I GOT ON THE INTERNET AND REALIZE MANY OF US ARE NOT TRULY DIAGNOSED. ANYWAYS, SHORTYLY AFTER ALL MY MUSCLES ACHED SO TERRIBLY I FELT AS I COULD FALL AT ANY TIME, THE TINGLING AT A MINIMAL, BUT THEN STARTED THE HORRIBLE ALL OVER THE BODY FASICULATIONS-AND HERE I AM 7 MONTHS LATER, WITH ALL SYMPTOMS GONE EXCEPT FOR THE FASICULATIONS-ONLY RARELY CAN I SEE THEM IN MY FEET, BUT MOSTLY FEEL AS IF MY MUSCLES ARE JUMPING ON THEIR OWN. I HAVE HAD NEG HEAD MRI-SPINE MRI SHOWED BULGING DISK AT C6-C7, 3 NEG EMG'S, EVEN IN THE AREA OF THE VISIBLE FASICULATIONS-THANK GOD NOTHING ABNORMAL SHOWS UP-
I ALSO WILL MENTION I HAVE DEVELOPED HYPER REFLEXES WHICH MY DOC THINKS IS DUE TO THE BULGING DISC-MY STORY IS SO SIMILAR TO ALL OF THE ONES I HAVE READ ON THE FORUM-AND I AM CONVINCE THAT ONE OF THE ABOVE THINGS HAS CAUSED THIS. DO NOT EVER LET THEM TELL YOU THIS IS IN YOUR HEAD BECAUSE IT IS REAL FOR THOSE OF US THAT TWITCH LIKE CRAZY-THAT IS ENOUGH TO MAKE ANYONE ANXIOUS. SORRY THIS IS SO LONG, BUT I JUST WANTED TO GET MY STORY ACROSS FOR ALL OF YOU WHO CAN RELATE--HOPEFULLY SOME DAY SOMEONE WILL HAVE A TRUE DIAGNOSIS FOR ALL OF THIS SO THAT OUR MINDS CAN BE PUT TO REST-EVEN WITH MY MEDICAL BACKROUND, I AM AT A LOSS AS TO WHAT COULD BE AFFECTING ALL OF US-HANG IN THERE!!!LISA,RN,BSN

[sue]

CJ, thanks so much for your feedback.  I hope you are doing okay now, what a horrible experience.  I tell everyone about the lyme vaccine, we have seen 4 pediatricians ( my daughter had still been going to her childhood Drs. because they specialize in adolescent medicine and she basically went for sports physicals.)
We have also seen 2 infectious disease specialists, a diagnostic specialist and and ENT ( due to enlarged lymph nodes ) at our local Children's Hospital.  The diagnostic specialist specializes in lyme and just dismisses the lyme vaccine factor.  It had been a major concern for me since she was misdiagnosed with mono and I keep bringing it up.  The specialists originally thought it was Hodgkins because of lymph nodes increasing in size and the sweats and chills but MRI of the neck indicated no - and lymph nodes are decreasing. We are seeing a neurologist tomorrow for the pain in her side.  I don't know what he will know about lyme disease.  I do feel like I am on my own here with nobody taking us seriously.  Our pediatrician told her to just go out and do things and you will feel better -he also recommened "counseling". I personally have no problems at all with counseling when needed but this is not the case. This is a well rounded popular teenager with a great attitude about life - even after all she has been through she continues to get all A's in her schoolwork and keep her spirits up.

There has to be an answer for us.  I really do appreciate your feedback, it is very helpful.  I will keep you posted on the neuro visit.  

Sue