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]

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

[Shortyrock]

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??

[hannah3777]

i have M.S. its been official for 6 years now.if you end up having it ask me anything you want.every neuro will have a different take on it dont get crazy if it comes back positive.stay strong

[Shortyrock]

Thanks for the advice want2bik1...

........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

[want2bik1]

It is hard to put names on these diseases because the sympthoms are similiar.  You will need many test to determine what you have.  The important thing is to understand we get these diseases because of what we put in our bodies.  It we stop putting the bad things in our bodies and start eating the good things our bodies can get better.  If you want to research some reasons we get sick google; amalgam fillings (mercury poisoning), artifical sweetners, MSG, Hydrogenated oils, Trans fats.  Many of the products we consume are not good for our bodies and when we get too much of this bad stuff in our bodies we get sick.  Get the book "Prescription for Nutritional Healing" which will explain the natural supplements and food you can eat to heal your body.    

[Shortyrock]

Thanks Tiff!
I'm doing a lot of research and have appointments with a couple different Neuros coming up....So more tests soon for sure....thanks for the advice!

-Jeff

[tiffaroonie]

Your best bet is to be evaluated by the neurologist.  I had unexplained symptoms for years and MRI after MRI which were always normal, until this past year.  All of a sudden, after waking one day with numbness in my torso and weakness in 1 leg - I had abnormalites on my brain and spinal MRI's as well as abnormal visual tests and nerve conduction studies...yep - diagnosed with MS - probably has been there all along but not significant enough to show up on testing until now.
I know the Canadian health care system is much different that that here in the US.  In terms of an MS diagnosis.....every dr. uses different criteria.  The usual is that you must have abnormal results on at least 3 tests and at least 2 isolated "relapses".  Testing includes MRI's brain, spine, visual evoked response testing (to see if damage has occurred on the optic nerve), blood tests to rule out other MS mimicking diseases, nerve conduction testing and spinal tap.  The spinal tap will show if "o-bands" are present indicating a diagnosis of MS.    I never had to undergo the spinal tap...the results of my other testing were so significant, my Dr. said it was  unnecessary.
Be your own advocate - reseach as much as you can on your own and do NOT let your drs. dismiss you.  I hope you find a solution to your problem soon.

[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

[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.
Good luck for the MRI, next week,
Please keep me informed, im very interested, in your post.

Have you had a lumbar puncture, sometimes known as the spinal tap?

Im keeping my fingers crossed for you and your family, that they findout whats wrong real quick to give you treatment so you can enjoy your life.

Best wishes Jeff
Nicola

[Shortyrock]

Hey Nicola,
Thanks for the Reply...
I've had alot of tests so far...none yet for the Neurological stuff as I am still waiting to see a Neurologist...
I've had tons of blood work done..a CT scan on my Chest/Abdomen/Pelvis..a few abdominal Ultra Sounds...stool tests...urine tests...an upper GI Endoscopy and more....
Next week I'll be having an MRI on my brain and Spine...

No I've never had any Mouth Ulcers..

My main problems are Weakness and tingling in my legs and intense mid back pain...

I'll keep you posted...

-Jeff

[thyroidian]

This could be one of many things, but whatever it is , this needs dealing with and a proper diagnosis and treatment, so you can feel better.

Well yes these symptoms go in line with MS.

But this also sounds like Bechets , disease to me.
Have you had any ulcers in the mouth?

This could be a form of vasculitis,also.

Have you had any testing? and if so please could you say what and the test results, just so i get a better picture, and can help you further.

Take care

Nicola