Burning, tingling, tremors,etc

[Nancy L]

Hi, im still searching for answers.  Heres whats been going on

July 1999:  Awake one morning with tingling in both lower arms and both lower legs.  One week later get burning pain in both arms.  One week after that, develop stiff neck and shoulders and very low grade fever (about 99.0).  Fever goes away after a few days.  Then develop burning pain ALL over my body (head to toe!)  Have blood work done-nothing shows up except wbc is around 4.1 but that goes back up within another month.  Ive had a brain MRI, spinal MRI, nerve test, arthritis tests, lymes disease test (done 3 times:  first two times came back neither positive nor negative, third time came back negative).  Ive seen 3 neuologists and none of them feel this is neurological.  I now get some muscle pain througout body, twitches everywhere, tremors, head pain and feelings that one side of my face is going numb at times and then twiches or just plain hurts at other times, ear pain in right ear and throat tightness at times (have seen an ent doctor who cant find anything).  I still get terrible burning pain and sometimes I find it hard to concentrate on what im doing.  My feet feel really hot at times and other times feel very cold (been tested for diabetes and thyroid), burning sensations on abdominal area.  My symptoms seem to change day to day and i generally feel like im "coming down with something".  I do get chills from time to time as well.  Been told I have fibromyalgia.  My hands hurt a lot- are stiff when I first wake up in the morning, but theres no swelling.  Im very scared and I dont know what to do or where to go next.  Burning pain is especially bad in head and neck area, but does not feel like a "Deep" pain, more like someone has drenched my body with icy hot!  Get tightness and burning in chest area as well.  Been told these arent signs of cancer or MS or any other disease entity, but no one is sure of whats going on.  Can cancer present itself in this way?  Where should I go from here?  If its fibromyalgia, would it effect me in this way?  Any advice or help would be greatly appreciated.  Thanks for your time.

[CCF Neuro[P]MD, RPS]

Dear Nancy:

Sorry to hear about your paraesthesias and pain.  From all the negative tests, which in fact is a really good sign, it is difficult to tell you what may be going on.  A post-viral syndrome may be the cause and symptoms as you describe have been associated with viral illness.  A condition called benign fasciculations can also be the illness.  A vitamin B deficiency that should have been picked up with a vitamin B-12 level and EMG can also cause your symptoms.  A paraneoplastic disease could cause symptoms as you describe but some of your tests would have been normal.  (the low wbc was likely due to your viral illness)  There are clinical criteria for fibromyalgia and your physician would make that diagnosis, although your symptoms do not completely fit.  I would favor a post-viral illness.  There are medications that can help, and I would discuss your options with your physician.

Sincerely,

CCF Neuro MD

[Nancy RE:CCF Neuro]

Thank you for your help.  B-12 test was normal.  Can they test for viral infections?  What is a paraneoplastic disease?  How long can post viral symptoms last?  Thanks again for your help!

[To Nancy/From Maureen]

Nancy, you could have been telling my story almost to the tee.  You should e-mail me.  I have been to many different kinds of doctors and still have no answer.   It's been almost 4 years for me.  ***@****

[Kathy and Jonathan to Dr. RPS]

Dear Dr. RPS:

Sorry to try to get through to you like this, but the Mayo Clinic information from our recent visit is posted in our original area further down the page. We are returning there to begin again Jan. 24th with Dr. Low in the Autonomic Dysfunction Center.

I can't get to the computer early enough to get a new post in to you, so I hope you see the new info down the page.

Hugs,

Kathy and Jonathan

[CALLIE]

Same symptoms here! My doctor told me it was stress. Xanax has REALLY helped. I am amazed!

[Nancy to Callie]

What type of symptoms were/are you having?

[CALLIE]

Nancy, I had a lot of tingling, pins and needles, burning skin (felt like I was sitting in the sun), numbness on my face, twitches, and a burning tingling sensation in my throat. I found when I take the xanax it all goes away. I didn't believe the doc when he said it could be nerves but I guess he was right. I hope everything works out for you.

[C J]

Dear Doc RPS:

It's all post-viral.  You know it, I know it.  All due to the heavy traffic caused by the flu season.  Seems like it happens every year like clockwork.  It is a bit un-nerving for both parties.  Physicians tire from saying the right thing, patients tire from the actual stress of not understanding just what it is that won't go away.  Syrus said, "The pain of the mind is worse than the pain of the body."  So true.  If a person suffers in question, after a while the mind plays games.  When they get past the point of frustration, it becomes literally impossible to relate facts and symptoms, thus resulting in the lost ability to communicate purpose.  Stress creates a jigsaw puzzle of misconstrued information. It's like, "I first had this... no... that... but I think it was before...?"  In the end, they walk away, still suffering and minus the handfuls of hair they ripped-out because they feel no one is taking them seriously.  The point is... they're still in the dilemna and the stress is getting worse.  Callie?  Get off the Xanax.  It might help now, but I assure you... it's addictive and hard to get off of.  You don't want to compound your problem.  Given the nature of the drug, I have no doubt that it makes all your problems go away.  The question is:  When the Xanax wears off, how do you feel?  So bad you have to take Xanax?  If so, you've got another problem.

Sincerely,

Christine  (I too, am a post-viral victim- GBS)

[Bret]

I too have had all these same symptons and tests done.  Cant find  a thing wrong with the tests.  So if it is a post viral thing, then what do you do from here Docs??

[Bret]

One more thing, during my visit to the neurologist he came to the  conclusion that I am suffering from migraines.  I didnt understand this since I am not having headaches at all, what I am having is burning, numbness and pins and needles and aching, it comes and goes with good days and bad ones.  Well I  figured the neuroligist I went too knows what he is talking about and have been taking Inderal LA that he prescribed for my supposed migraines.  It is having absolutely no effect at all on my problem.  So just like the rest of you I am at a loss now  and very depressed that no one knows what this is.

[CCF Neuro[P] MD, RPS]

Dear Bret:

It is impossible to tell you what you have over the internet, which you probably already know.  I would think that since all your tests are normal, EMG, neurological exam, that you may have benign fasciculations.  You do not indicate that you have had a recent viral illness, so what you have may not be post-viral.  If it is benign fasciculations, then eventually they will go away on their own.  Fatigue, anxiety tend to make them worse.  There really is no good treatment for these.

Sincerely,

CCF Neuro MD

[Nancy: RE CCF NEURO]

How do you test for a post-viral syndrome?  Im only 27 and im really scared.  These symptoms have gone on for so long now and they seem to be increasing at times.  Is that possible with a post viral syndrome?  Thank you so much, your comments are always a help and can be reassuring.

[PGP]

has anyone considered trigeminal neuralgia?

[Rowana]

I agree with Christine -- whoever is on Xanax, you'd be better off getting off it now.  My doctor threw Xanax at me when I came in with basically the same symptoms Nancy describes.  He said it was stress-related, and Xanax would help me calm down and feel better.  Well, yes.  For a while.  The trouble is that Xanax is a GABA reuptake inhibitor, and when you go OFF the Xanax, the brakes are off, and you have rebound anxiety like you won't believe.  You will feel a million times WORSE -- and if your underlying problem is fibromyalgia, that will be worse, too.  Xanax is just a crutch that does not solve the problem.  And it's extremely addictive.  Take it from one who's been there...get off the drug now!

[Maureen]

I wonder if the neurologist here would please direct us to the best kind of doctor to treat post-viral syndrome so we could stop peppering him with questions!  Is it a neuro?  Rheum?  Infectious Disease?  

Are there any theories as to what actually occurs post-virally?  Are we producing abnormal antibodies?  Is our myelin sheath damaged?  Is there any research going on in this area whatsoever?

HELP!!!!!

[CCF Neuro[P] MD, RPS]

Dear Maureen:

There is no test for post-viral illness.  One arrives at this conclusion based on the history and physical exam, after lab tests have ruled out the usual and unusual things.  Sometimes we really do not know what a patient has early on in the disease.  After a period of time the collection of abnormalities finally gives us a diagnosis.  However, in some cases we are stumped.  Often, post viral labels get placed on these types of diseases.

Sorry, I'm not much of a help.

Sincerely,

CCF Neuro MD

[C J]

Dear Doc RPS:

Something strange occurred to me last night and I would like your opinion.  Question:  What would happen if a person was consuming large doses of antibiotics and at some point during the treatment, they contracted the flu... or had to recieve the tetnus vaccine?  Since antibiotics are worthless against virus as opposed to bacteria, what exactly would the virus do to combat the antibiotic (and vice versa)?   Would/could  it wreak havoc on the immune system?  Cause dysfunction?   Create an autoimmune disorder?

I'm just curious,

Christine

[MaureenMcL]

Thank you CCF neuro.  You are a help!  If the symptoms were getting better over the course of time and not worse would that favor a post viral syndrome?  Such is the case for me.  I appreciate your time and help for all of us here on this board.

[chris]

I am 27 yrears old and i shake alot and i don't know why. i get worse when plople talk about it. is there anything you can do to help me?


sincerly,
  chris  (***@****)

[C J - To Nancy and Maureen]

Nancy... Maureen:

The symptoms that you two describe fit the post-viral profile to the tee that Maureen indicates.  She's been recovering for 4 years.  It's a crazy thing in that each case of post-viral, many of the symptoms are the same but not truly identical in strength or severity.  It almost resembles Jekyll and Hyde.

Numbness is a dead giveaway for post viral.  In my case, I was paralyzed from head to toe and it all began with the burning, tingling, and hot/cold feelings, then the numbness set in as you have described.  1st... the left side of my face,  2nd... my tongue.  Then my toes and fingertips.  Full-blown, the numbess extended just past my knees and likewise past my elbows.  Along with the lack of feeling came the paralysis.  At some point along the way, my whole face became void of movement.

You talk about scared.  I was petrified... and it was all post viral.  Symptoms can be characteristically mild... or hideously wicked.  I've been there.  I can totally identify with you and your frustrations.  It pains me, after 28 years, to witness in others the same utter confusion and terror (depending on severity), that this disorder possesses.  I'm with you both... and pray that you both will recover soon.  Thanks for listening, and if you want to talk more, email me at:  ***@****

Sincerely,

Christine

[CCF Neuro[P] MD, RPS]

thanks for your comments.

CCF Neuro MD

[Kathy]

Five years ago I suddenly became dizzy burning sensations in spine, aching in right arm ,also broke out in a rash. Electric like shock sensations to all parts of body. Doctor called it paratheses gave me some Xanax and six monthslater it disappeared.
I had been under severe stress so I thought this must be problem.
Now 5 years later no stress buyt problem is back only worse with pain in neck shoulders and back weakness there and in legs. Doc says that I have a degenerated disc in upper spine and lower spine that could be causing these problems I also haven't had the flu. Does this sound right?