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1359227 tn?1282522148

GBS? CIDP? Need help in my search for Diagnosis

Hi, my name is Jeff, I'm 29 years old ...Previously healthy.. from Toronto Canada. ...with no family history of neurological disorders.
My problems started in late November 2009...I began getting intense burning pain in my back around my left shoulder blade, The pain was fairly constant and sometimes I would feel the same Burning pain around my right shoulder blade as well..but less frequently. I visited my family doctor and he told me he thought maybe I had a pinched nerve. I was sent for an X-ray on my back, we discovered mild scoliosis but that's it, the pain continued...sometimes it felt hard to breathe so my doctor sent me for a CT scan on my lungs on Christmas Eve '09 ..It came back normal.
In January 2010, the burning pain spread to the front around my breastbone or sternum and the top of my stomach...I also began having digestive problems; Bloating , Constipation , Hard pale stool sometimes, diarrhea other times. So my doctor ordered an abdominal ultrasound which was normal, next I had a stool test, which was normal, in February I had an Upper GI Endoscopy and an abdominal CT and...both studies were normal.

So my burning back and digestive problems persisted unchanged...until the end of May....I caught the flu from my girlfriend, I developed a bad sore throat and cough runny nose ect... then Lymph nodes swelled up on either side of my neck, this never happened to me before...I went to the ER and they did a throat swab for Strep throat, It was negative, the Doctor in the ER told me that the swollen nodes weren't too uncommon, so I went home to wait it out, My flu went away but the nodes remained for a few days. 4 or 5 days after the flu subsided I started to feel slightly week in the legs and tingling around my ankles, a couple days later I noticed the tingling and weakness around my wrists and hands...by the end of the week the tingling got worse and felt more like sharp burning but remained in the lower extremities...I visited my doctor and he referred me to a neurologist at a local university affiliated hospital. I went home hoping I'd get a phone call in the next few days...Instead I got worse with the Burning pain spreading upwards to my biceps and thighs...By mid June...about two weeks after onset...I could barely stand due to the burning and weakness...

So I called an ambulance and was admitted to hospital under suspicion of Guillane Barre Syndrome. The next day I was seen by the neurologist, who was puzzled because all my reflexes were present and as weak as my muscles felt, I still measured 3's and 4's clinically. I was sent for a brain and spine MRI which came back normal, then the next day I was taken for an EMG and Nerve Conduction studies...both were normal, as was all the blood tests they ran. They kept me for a couple more days to observe me and make sure no respiratory involvement occurred...Then I was released home...still weak and burning all over. I noticed over the first few days that I got worse...so I decided to get my girlfriend to drive me to a bigger hospital in Downtown Toronto.June 26 2010...

They also admitted me under suspicion of GBS, they did a lumbar puncture right there in the ER and sent off a host of blood tests as well...all came back normal. In the next couple days I was looked at by a whole team of neurologists who measured my strength and balance and coordination and sensitivity to touch...I was still measuring 3's and 4's in strength and perfect in all other aspects...despite all the burning i felt..I didn't feel numb anywhere and had no loss of sensation at all. The burning continued to climb my body, by the end of June it was primarily in my thighs and biceps and less so in my distal extremities. The burning and weakness also started to creep into my face and neck. I was sent for another MRI on my brain and spine which showed mild clumping of nerve roots in my spine but the nerves weren't inflamed and the tests were otherwise normal. I also had another round of EMG and NCV tests which again were normal....I was again released from hospital in July.Told to follow up as an out patient....still in bad shape weak burning and scared...I told myself I was gonna be as strong as I could and wait the 2 weeks for my follow up appointments.

At home the burning and weakness continued and sometimes it would get tight in my throat around my adams apple and it burned in my facial muscles, especially in my jaw and cheek bones. Walking was still difficult...

My first follow up appointment was on August 7th they ran blood again, sent off an Elisa test for Lyme and repeated EMG and NCV which AGAIN came back normal.

I started to get stronger in my lower extremities but the burning pain...which now felt like my actual muscles were burning...was still intense in my thighs and shoulders and face...sometimes even the tip of my tongue would tingle.I started feeling alot of pains in my muscles and joints and little twitches in my arms legs face and even eyelids......

Today...August 18th 2010 was my second follow up, I now mainly feel the burning and weakness in my thighs and upper shoulders, and occasionally the face....I had an EMG today...they stuck the needle in my sorest weakest muscle (my right thigh) and said the study was normal...Nerve conduction was again normal...Where do I go from here? What is the next logical step? I do feel stronger in certain areas than I did in June and July ...and can walk because my lower legs are pretty strong...Is Biopsy the next test that should be discussed? The Neurologist I've been following up with thinks this is some kind of post viral thing where my nerves and muscles went crazy...I'm seeing another one next week for a fresh opinion...I don't feel right just hoping this resolves itself......

Any Ideas about what this sounds like to you?

PS: I've been tested twice for HIV and other STI's

Sorry for the long post...
Thanks -Jeff
4 Responses
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1359227 tn?1282522148
Hey MMahon....Thanks for the response, The reason I thought it was GBS initially and CIPD afterward was because of the initial presentation of my symptoms after the viral infection...and the fact that it started out in my lower extremities and progressed in an ascending fashion...but all my reflexes were completely normal..as was my CSF and I think that most of the weakness I had and still have is more perceived and pain related than it is real weakness.
About the anxiety...I gave it serious thought when I was in the hospital...but the thing is...I am and have always been a carefree laid back type of person...I have a son who just turned one and an amazing fiance and we were looking forward to buying a house in the next year or so....I am stressed out a lot of the time now...but that's only because of this nightmarish situation that took place after the infection....
I kind of think that I was sick before I caught the flu from my fiance...so my immune system was compromised at the time and couldn't fight the flu and that led to whatever this is...what I'm trying to figure out is whether what happened to me has a name? Or if it really is just my immune and nervous system going nuts post viral....

-Jeff

Helpful - 0
1291268 tn?1274810922
I have CIDP and would say that you probably don't have it or GBS. If your EMG's and Nerve conduction studies were normal then a nerve biopsy would probably not be indicated.
A lot of your symptoms sound like anxiety disorder.  Anxiety disorder has a large laundry list of symptoms so it's easy to say something points to it.  You have ruled many things out but have any of your doctors mentioned anxiety as a possible cause?
Anxiety disorder causes physical ailments that lead people all over the medical map looking for any number of conditions.  They usually wind up as frustrating dead ends.  It's hard to believe that anxiety can do these things to you but it's a nervous system disorder and your nervous system controls your entire body.  When it goes awry the results can and do show up anywhere and a lot more severely then you may ever have imagined.  
Your nervous system may very well be getting 'inflammed' for unknown reasons and being attacked by your immune system but since you are young the demyelination may not yet be that bad and not showing up on tests.   This is just my opinion as my nervous system had long term damage over a long period of time, long before being diagnosed.
In any case, give anxiety disorder some consideration.  Check out the anxiety forum here.
You have nothing to lose.  Good luck.
Helpful - 0
1359227 tn?1282522148
Thanks for the response honeybear....
I think you're right and I should talk to my family doctor about a referral to a Rheumatologist..I have an appointment with him next week so I'll ask him then...
Did you ever get a diagnosis?

Jeff
Helpful - 0
Avatar universal
Try going to a Rheumatologist.  I have the very same thing and have seen 3 different neurologist which keep referring me to other  doctors because they are stumped.  I was informed of treatment from my husbands co-worker and decided it couldn't hurt.  When I went to see the Rheumatologist the doctor took time to discuss with me the possibilities from review of all the other doctors notes, labs and diagnostic images.  This doctor then ordered lab work that wasn't even thought of by the neurologist's.  With the new lab work that came back I am more confident that we will have an answer soon.  If it is viral or an underlying condition you need to seek a doctor that is willing to go the further distance with you compared to a doctor that will concur with other doctors and still have no answer.  Hope this helps.
Helpful - 0
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