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1359227 tn?1282522148

I'm new to the group...Here's my story!

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......

...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?
6 Responses
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1359227 tn?1282522148
Thanks Jenny...I like it here so far ;)
Helpful - 0
1359227 tn?1282522148
Well that's good that you got taken care of quickly...I'm in Toronto Canada..and getting an appointment with a Neurologist or any specialist for that matter..generally takes AT LEAST a month...I went to 5 different ER's before I was finally admitted...but at least when I did get admitted all the tests came quickly.
How did your symptoms begin?
Did they start after a flu or virus?
Were your symptoms bilateral?

I hope your sx are just post viral and they resolve themselves...keep me updated though! ;)

-Jeff
Helpful - 0
956292 tn?1334054869
Hey,


We are with you when you say the worst is not knowing..I am playing the wait and see game with my doc...wait and see for what? i don't know..I have had simialr sensations and experiences as yours and abnormal MRI which suggests MS.....

We are here for you ...I am sure some others will put in their advice and suggestions for you.

Jibby
Helpful - 0
1423392 tn?1286590390
I wish I could see the GP that I went to she was a floater dr for the day she was awesome she got me in for MRI the next day and called and got me a neuro appointment that same week...She told me it would or could take months she didn't want that to happen to me ...I didn't even have GP because I hadn't been to dr in two and half years I'm healthy person.. until about 4 months ago..I had loss all my sense of balance walking around like a drunk person,,swaying trunk and started with some vision problems...what ever more syptoms now ...Oligoclonal Bands that I tested postive  for are seen I think 80 to 90 percent MS patients or in other dieases.....So at this point I'm still in limbo because MRI's are clean so I'm praying for post virual thing and that we both will have a speed recovery ..by the way I hate the waiting game
Helpful - 0
1359227 tn?1282522148
Hey, thanks for the response ;)
I'm hoping my issues are post viral too...but it's the not knowing that's the worst.
I did have a spinal tap...they said it was completely normal.

This is a list of tests that I've done so far:

- Spinal Tap
- 3 MRI's of my spine
- 3 MRI's of my brain
- 4 Nerve Conduction Tests
- 4 EMG's
- Tons of blood work
- Elisa for Lyme
- Tested for HIV, Gonorrhea, Syphilis, Herpes
- CT scan of Chest
- CT scan of abdomen and pelvis
- Abdominal ultrasound
- Many chest X-rays
- An Upper GI Endoscopy

All the above tests were normal....I have a colonoscopy later this month...and a muscle biopsy in October...

I just turned 29 and although I did smoke half a pack of cigarettes a day for 10 years (I quit when these symptoms started) I am a very active person...with a physical job and never had a health problem until all this started last November.

Just like you...I know my body...I know something isn't right...so I'm continuing to search...very aggressively for answers...when I'm not doing that...I'm working on keeping my body strong.

I'm on Amytriptyline for the burning....but the 3 neuro's I've seen haven't been able to help me....It was actually my family doctor that ordered the muscle biopsy...weird huh?

So if you have the elevated protien in your CSF..that's something to go on right??

Stay strong!
Helpful - 0
1423392 tn?1286590390
Hi Shortyrock,
Wow you have alot going on I hope you will find answers soon. We have couple of things in common I'm in limbo land..I too was initially tested for GBS that was maybe one of list of possible dx  my neuro came up along with a couple of other things..I have been through a ton of testing and the only thing that has come back is 3 olicigonal bands in spinal fluid and evaluated protein level.. I don't experience the burning feeling in my muscles but sometimes my skin feels like its on fire. I also experience weakness in my muscle mainly in my legs and hands ....really wobble some days and my hands are constantly shaky..I experience more numbness in my different body parts then a burning sensation...She said that it could be a post virual thing too...which is great but how long does it take to get over it is my question....I use to run at least my 5 miles a day and now some days it's hard to get off the sofa..I'm lucky have a great neuro dr. the first one I went to wasn't he blew me off so I continued my search to get answers and found her. I told my husband I know my body and my health and something is not right...My neuro has been treating my with steroids which has not taken away all my symptoms but have made then more controllable...You are your  best advocate keep moving forward and I hope you can find some answers.. Did you every have spinal tap?
Helpful - 0
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