Does this sound like MS? Opinions would be appreciated....

[Shortyrock]

Hi, My name's Jeff Haynes, I'm from Toronto Canada....
I'm 28 years old, never had any significant health problems up until last December.

In December 2009 I started to get a tingling burning sensation in my back around my left shoulder blade, after a week or so I started to notice my right shoulder blade was also sore...by the end of December the burning spread to my upper abdomen (the upper most part of my stomach) The burning would go back and forth between my back and stomach....My family doctor didn't know what was causing it....then about a month ago at the end of May...I caught a cold and sore throat from my girlfriend...well that virus set off something and my nerves went haywire...I started getting extreme weakness and tingling in both legs and to a lesser extent my arms...the weakness and tingling is bilateral and comes and goes in waves....I also get tingling between my scrotum and rectum from time to time......then my eyelids started burning pretty bad...that lasted a couple days leaving my eyes red and weak....I've also felt tingling in the back of my head along with pretty frequent dizzy spells...this has been going on for a month now...my initial problems with my burning shoulder blades and top of stomach are still present....I'm unable to work and waiting to see a specialist....I'm very scared....I have a 10 month old son and I'm praying I'm gonna be ok....  Does this sound like MS?? Lyme?? Any input or opinions would be appreciated!

[Shortyrock]

I'm not sure...but they've done a ton of bloodwork....
I have appointments with 3 neurologists coming up....I've been waiting almost 2 months for these appointments...hopefully they help....

Also.....are there any other post viral conditions that can cause tingling burning and weakness all over???

[Kabel]

I know how frustrating it is to feel so horrible, yet the doctors we count on so much can not provide any answers. You are scared and who wouldn't be. You have a right to be concerned.

Have they checked your A1C levels? Diabettes can cause the sympthoms you are experiencing if the blood sugar levels are off enough. It usually affects the legs and feet though. Or how about your ESR levels? That would show if their is any swelling.

Just keep asking questions and keep researching. While it usually isn't recommended for anyone to try to be their own doctor, if you are not getting the answers you need, then try doing your own research. But most importantly, find a neurologist who will take your concerns seriously.

I am truely sorry that you have to go through this. Not knowing is the worst possible thing.

[Shortyrock]

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??

[Shortyrock]

........just updating........
I've decided I'm going to check myself into a bigger hospital with more resources...my legs are still very weak...I'll be heading to the ER this afternoon....
Hoping for some answers....and praying I'll be ok.....
Thank you guys for all your help.....cross your fingers for me
I'll update as soon as I'm able to....hopefully with news..

- Jeff

[Doodles_Mimi]

I am sorry to hear the struggle you are facing. I had a rare disease and it took almost 6yrs before a diagnosis, it is frustrating and scary. There is one thing I can think of myself, Fibromyalgia. I don't know a whole lot about it but, my Daughter has recently been diagnosed with it. Some people don't believe there is such a disease because there is no certain cause they can point to. Well, there are a multitude of diseasees that have taken years to find a source for. What I do know  my Daughter's symptoms started with the burning and tingling in her lower legs. Then it started moving up her lower back. At first she thought it was Tendonitus. She had suffered an bad ankle injury some years earlier and the Doctors said because of that she would most likely get Tendonitus. But this pain moves everywhere, some days more pain, others less. She would toss and turn all night and be extremly tired all the time. Some days she wakes up crying, she is too exhausted to get out of bed, but she has to (three kids).It is very painful. It is like the neuropathy that diabetics can get. They tested her for everything else. The doctor has prescribed " Neurontin" to help with her pain so far,  for her, it mostly helps her get sleep at night. I don't know if this will help you , but you can bring it up to your Doctor! Good luck.

[Shortyrock]

Hey, I've had nerve conduction tests which were normal....I wanted the spinal tap...maybe the neuro will arrange that at the next appointment on July 26th....
I did not have a rash...but did have many many blood tests ..a full blood count..tests for thyroid function...and tests for lyme among many many others.....both my B12 and potassium levels are fine.......I'm also leaning towards the Idea that this could be a Virus in the CSF....gotta keep digging...thanks Nicola...I'll keep you updated

-Jeff

[thyroidian]

I would say if youre symptoms are the same, you need some nerve conduction tests, and spinal tap following.
This could be a virus in the cerebal spinal fluid.

I thought this could have been maybe guillain-barre, or transverse myelitis, but this would have been picked up on the MRI, if it had been transverse myelitis.

May i ask have you had any form of a rash with these symptoms? you are experiencing now.

Have you had ESR blood test to check for inflammation.
Have you had a full blood count , to check white blood cells

Have you had potassium and B12 checked?

Sorry im asking a lot of questions.

Im just trying to get a better picture,
Ive got my fingers crossed, hoping they find out the cause real soon.
Nicola

[Shortyrock]

Here's an update....
I called an Ambulance on June 26th...
I was admitted to hospital that night by the ER doctor who suspected Guillaine-Barre syndrome or Myathenis Gravis....They did a CT of my spine...an MRI of my brain and spine...and an EMG...all came back normal..they also ran blood tests to check for Thyroid problems and vitamin deficiencies...those were normal too....This is a rather small hospital close to where I live and the neurologists that work in this hospital have offices 30 minutes away and are rarely ever actually at the hospital....I was released today after 9 days in the hospital..still with no answers..and still barely being able to walk due to the burning and weakness in my legs and arms...they told me to just keep following up with the neuro.....I feel like not enough investigating was done....how do they just send me home without a Diagnosis and barely being able to function??? Should they not have done a lot more tests??? Spinal tap Maybe?? I'm considering going through this all over again at a bigger hospital with more resources...What does everybody think???

-Jeff

[thyroidian]

Good luck at the ER.
Hope you get it sorted.

Thinking of you,
Nicola

[Shortyrock]

I have an appointment on Wednesday with a Neurologist....but I don't think I can make it till then....The burning and weakness in my arms and legs is getting so intense that I can barely stand or hold a cup.....I will be going to the ER soon...I'm very scared....I hope they admit me and run tests there....I'm praying I'll be ok...

[thyroidian]

Hi. Jeff.

Sorry, ive just answered the other post, well i was thinking have you had any Nerve Conduction Tests?

Maybe you should ask for some to be done if you havent.
Have you had a lumbar pucture often known as the spinal tap?

Hopefully the MRI will pick something up, especially in the spinal cord.
You could have a small block of inflammation in the spinal cord, which is myelitis, causing these awful sensations.
The MRI will pick it up if it is.

Keep me posted

Nicola

[Shortyrock]

Thanks for the Reply....
All the neuro pain and tingling is still going strong...most of the time in my legs in different spots and my wrists and forearms..Very weak in the legs and arms...I can walk and function but its tough cuz i feel so weak...
Also mid and upper back pain, and pain right in the middle of my spine....
The eye burning hasn't come back...but everything else hasn't really gone away....it just takes turns burning and tingling in different places...It's really rough.....I will keep you posted though!

- Jeff

[Dr. Kokil Mathur]

It does not sound like MS but if all the mentioned conditions are ruked out, then this possibility should be looked into.
Generalized feeling of a burning sensation can be due to dry skin, hyperthyroid states, liver or gall bladder dysfunction, peripheral neuropathies or decreased sweating as in Sjogren’s syndrome. Hyperthyroidism should be suspected in case of burning in eyes and hot and sweaty upper body. Fibromyalgia is another possibility.This would need a comprehensive investigation.
Hope this helps. Do let me know if there is any thing else and keep me posted. Take care!