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1359227 tn?1282522148

Need a little help with 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

8 Responses
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Avatar universal
Hi,Please ask your neurologist if he can test you for presence of GLYCIDE AMIDE ADDUCT in  your blood and for good measure also check for presence of MYCOTOXINS in the same sample.
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Avatar universal
I can't believe you still have no answers.  I remember responding to one of your previous posts.  

The only other things I can think of are Post Viral Syndrome or possible heavy metal poisoning.  I know those guesses are out there, but.....
Helpful - 0
1359227 tn?1282522148
Thanks for the response soldy,
I will definitely ask my Neuro about testing for those.

Hey Londres70, Yes I'm still without answers unfortunately...I have good days and bad days now...lots of muscle and joint pain mostly...It's definitely less intense than it was in June and July... I don't know what else to do??
Helpful - 0
Avatar universal
When you state you are having your good days and bad days now I am now leaning towards this could be Post Viral Syndrome, it can be difficult to diagnose and can take a while to resolve.  Well, at least there are some good days now, thank goodness.  I will keep you and your family in my thoughts and prayers.  You are too young to have to deal with this.  

Keep us posted about your visit.  
Helpful - 0
1359227 tn?1282522148
Hey, Thanks for the thoughts and prayers Londres70... well I'm hoping it does resolve itself...but if it does I'll always wonder if it will return and what it was...but I'll happily take my health back with no answers....I'll keep you guys updated...
Helpful - 0
1359227 tn?1282522148
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Avatar universal
Sounds like Chronic fatigue syndrome (myalgic encephalitis).
Helpful - 0
Avatar universal
Did u ever get answers? I have so many of the same symptoms. Was it viral?  Please let me know what you found out
Helpful - 0
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