My name's Jeff, I need an expert's opinion on my situation....
7 months ago, back in December 2009, I started to get intense burning pain in my Left shoulder blade....a couple of weeks later it spread to the right shoulder blade as well.....in January it got alot less intense...but spread around to the front across the very top of my stomach....It was annoying but didn't really interrupt my daily activities...my family doctor and I thought it might be stomach related....and so early in the year I had a lot of blood work done, an ultrasound and CT of my abdomen...A CT on my lungs...stool tests...and an upper GI Endoscopy...All were completely normal.
Then at the end of May, I caught a sore throat from my girlfriend....the glands in my neck swelled up...I had a cough and runny nose....a couple days later that flu/cold started to subside...but my legs started tingling and I started to get burning around my eyelids...the burning around my eyes left them sore and red...the tingling in my legs turned to burning and weakness and seemed to get more intense by the day....I also got tingling in my cheekbones and the back of my head....by the middle of June my legs were so weak from the burning and weakness that i could barely stand...I also had burning in my arms but to a lesser extent....I called an ambulance and was admitted to my local hospital...they did an MRI on my brain and spine which came back normal...and an EMG which was also normal.....they didn't do a Spinal Tap (not sure why not)....I was released from hospital still very weak without answers and told to follow up with a Neurologist......
What does this sound like? Does it sound like this is all related to my initial problems with my back and upper abdomen? Or did the flu spawn something new?? What should I do next?
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.
Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
Burning sensation is a usually form of neuropathic pain, i.e., pain from nerves. There are two types of nerves in the body – small and large. Disorders causing neuropathic pain include but are not limited to diabetes, vitamin deficiencies, autoimmune disorders such as lupus or a disease called Sjogren's, certain types of neoplasm, and certain toxins (such as lead). With small fiber disorders, the EMG/NCS test which measures how nerves conduct electricity and how muscles respond to them may be normal. However, in large fiber neuropathies, the EMG/NCS will be abnormal. Small fiber neuropathy can be diagnosed with a skin biopsy and with a test called a QSART.
Migrating sensory symptoms sometimes may be related to a headache or a seizure. The migratory pattern (location and timing) you describe do not seem to be one of these.
Another condition that must be mentioned is fibromyalgia. Fibromyalagia leads to whole body pains.
It appears you have had an extensive workup. A normal MRI of the brain and spinal cord and EMG are reassuring. If the burning sensation persists, there are medications that can be tried. These include pregabalin and neurontin.
Viral illness can cause muscle pains and neuropathies. These viruses are most commonly either herpes varicella zoster (shingles), Epstein-Barr virus, cytomegalovirus, and other herpes simplex viruses. Also, HIV can cause neuropathies.
I agree that you should follow up with a neurologist. A thorough neurological examination, particularly of the motor strength and your reflexes, will be very helpful. I would discuss the LP with your neurologist. It is an invasive procedure and may or may not be necessary depending on the examination and history your neurologist takes. Additionally, depending on this consult, you may have blood work taken to examine for autoimmune or metabolic causes of neuropathic pain.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
Thanks for your responses,I checked into the hospital again with the unbearable burning and weakness in my legs and arms and back....they did an LP in Emergency which came back normal...then I was admitted...the next day a team of Neuro interns performed functional testing...testing my strength/coordination/Reflexes....Although I was (and still am) weak in my legs and to a lesser extent my arms...I guess I"m not weak enough to cause too much concern....all my reflexes are still brisk...and my coordination and vision is fine.....so they sent me to repeat my Brain and Spine MRI's...Again they came back normal....The next day they sent me for EMG and Nerve conduction tests(second time I've had these done)....this was also again somehow normal....They performed tons of blood work including :CBC/Electroytes, tsh, trp, liver panel,CRP,ESR and anything else they could think of.......after a week in hospital and nothing showing up in any tests...they decided to discharge me and let me follow up with the Neuro department from home....I wasn't very happy about this as I can't walk very well due to the weakness from the burning...and I'm often stuck in bed dealing with waves of sharp tingling and burning in my legs and back....I have appointments with a few Neurologists in the coming weeks....what's next?? A Nerve Biopsy? I don't know how long I can handle this...It's like being tortured....Anybody have any suggetions on what to do next??
I'm sorry to say I'm not terribly familiar with your hospitals up there, but I can give you one tip and maybe you can figure out how it applies to your hospitals (I'd be of more help if you were down in the States, sorry). :-/
The tests that the doc mentioned regarding small fiber neuropathy: QSART and the skin biopsy to assess for SFN are not available at all hospitals (in fact you'll find that quite a number of doctors will never have even heard of a QSART). QSART stands for quantitative sudomotor axon reflex testing. Hospitals that do have this test may classify it under their "autonomic" testing in their neuro lab (or in their autonomic lab if they have a separate autonomic testing department, which is rare, but present at a select number of facilities worldwide). If you are looking to have these tests done, it may help to look for hospitals that have autonomic testing listed under their neurology testing. When cold-calling hospitals to find out if they have tests such as QSART, I find that the most accurate answers come from talking to the neurology testing lab itself, not the neurology department (i.e. the scheduling desk/secretary) as the lab techs are often more aware of available tests than other departmental staff.
If you have further questions about these two tests, you can find me (and others familiar with these tests and what they test for) in the Dysautonomia Forum. (Just to be clear, I'm not suggesting whatsoever that you have dysautonomia, just offering our expertise on these particular tests which are probably more commonly administered to patients in our forum than in any other forum on MedHelp.)
Thanks for Responding....
I have appointments next week with two Neurologists....I will definitely inquire about the QSART and the skin biopsy...
I will definitely keep you guys updated as to what happens....
Thanks a lot for your help...
Wish me luck!
Well....my first Neurologist appointment was a big waste of time....He went over the MRI's I had done on my Brain and Spine...Tested my strength and reflexes again...then sat me down and said ...
"I don't think that we're gonna find out what's happening to you here, maybe I can refer you to somebody with more resources"
I couldn't believe he said that....Meanwhile after 7 weeks I'm still dealing with waves of Burning and weakness all over my body....
I'm glad I set up appointments with multiple specialists....I have another appointment tomorrow...I'm praying this one will be more compassionate.....
Not to scare you but I was sick for a couple years with mostly nerve related symptoms (weak legs, painful tingling hands, vision probs etc.) I was eventually diagnosed with a rare blood cancer. After seeing many different specialists I ended up in ER and was referred to ACM (ambulatory clinical medicine kinda like house) who diagnosed me.
A side effect from my treatment is peripheral neuropathy in my feet and legs. I now take Lyrica and it is working pretty well to ease the burning / pain / etc. and I'm able to get out and do things.
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