HELP! NO DIAGNOSIS YET

[Fenwaysmom]

I am having some very weird symptoms. It started on August 7th when I had some very weird nerve pain in my mouth a few months after having some dental work & a bite change. I tried anitboitics and antiinflammatories but nothing worked & there was nothing wrong with the teeth in that area. That lasted for about 3 weeks and then I started having numbness, tingling, fatique, and burning in my face all the way up to my eyes.  Then 2 days later, it went down my arms, hands and into my feet. My face has gotton better with PT,  but I still have these weird parathesias in both my arms & numbness & tingling in my hands with alot of pain that radiates into my arms on both sides. My skin is also very, very burny. My feet also tingle and it radiates up my leg to just below the knee, but no pain. This numbness or parathesia is CONSTANT!!! The pain will come & go, but usually is worse when I use my arms for things.  Sometimes it feels like a vise around my arm and wrist & it feels very very cold, like ice going through my veins. I've had spinal fusion @ C5/6 in 2002 and have been fine ever since. I've had a battery of tests MRI head & neck, 2 EMG"s & nerve conduction tests, echocardiogram, Xrays, extensive bloodwork, carotid doppler, CT scans of head and neck(in the ER) visual and hearing tests to check for MS, but all were negative. I have seen 3 neurologists+ my surgeon and they have all assured me that there is no nerve compression anywhere and it is not coming from the nerves. They suggested Fibromyalgia or some other autoimmune disorder & referred me to a Rheumatologist for further evaluation.  They think that it is a systemic problem. I AM SO SCARED!! I'm afraid that I'm going to be like this forever. I am a dental hygienist and cannot work right now due to this.  If I don't get back to work soon, I will loose my job.  Its been 6 weeks . Enough is enough already. I get up with this and go to bed with this.  The pain is different everyday and nothing helps, especially the burning on my skin. Does anyone know if Fibromyalgia or any other autoimmune disease will manifest this way?  I don't know what a Rheumalogist can do, but I hope something turns up.  I am starting to lose hope of ever getting back to living a normal life. Can someone help?

[patsy10]

If your test comes back negative (and it usually does), especially if it was the ELISA, lyme will probably be dismissed.  I was told I didn't have it either despite having the rash, all the symptoms, being an avid hiker etc...I saw numerous doctors including 5 or 6 neurologists.  I got the fibromyalgia diagnosis of course.  Not saying you have lyme but it is a possibility.  Less than 50% of people remember seeing a rash.  I didn't remember the rash until I saw a picture of a lyme rash over a year later.  I never even heard of lyme at the time.  If you want to learn more about lyme you can go to lymenet.org.

[Fenwaysmom]

I'm still waiting to hear from my Dr. regarding Thorasic Outlet Syndrome.  My arm right arm goes numb and tingling everyday about 15-20 minutes after I get up and it gets very cold. I'm afraid that the Lyme disease test will come back negative and he won't run another test to confirm it.  I don't have a rash or anything else.

[patsy10]

Thoracic outlet syndrome could not possibly cause all the symptoms you have.  It can cause the cold arm and loss of pulse though.

[patsy10]

This is almost exactly what happened to me.  My symptoms were the same. Long story short I was told it was my neck causing my symptoms even though I had blurred vision and all sorts of things that could not possibly be related.  I ended up having a  c 5/6 spinal fusion.  The surgery greatly worsened the problem.  Mine ended up being probable  lyme and I have improved greatly since taking treatment.  I thought I would lose my job as well.  I could hardly walk for months.  The testing for lyme is so inaccurate.  Mine was essentially negative but I had the rash, the symptoms and I recovered from treatment.

[HelpinUtah]

The best blood test for Lyme takes a couple weeks to get back due to the steps they have to take.  They took a simple test on me that came back negative, but the second test came back positive, which was the most accurate test.  

Good luck!!!

[Fenwaysmom]

As a matter of fact, I am getting blood tested tomorrow for that. But I have heard that blood tests for that aren't always accurate. Sometimes you have to do a Western blot test. My Dr. is also checking for lead and mercury toxins in the blood just in case.

[HelpinUtah]

Have they tested you for Lyme Disease?  I had that years ago and symptoms were similar.  Do you live somewhere that a deer tick could have bitten you?  I would be tested, just in case.  Goodluck!

[selmaS]

Stay positive...u r on the right road by doing research urself.....we must learn more about our dx and symptoms and teach out drs!!!....I am sure u will find the right dx and treatment.

Godspeed
"selma"

[Fenwaysmom]

I have seen 4 neurologists and none of them know what this is. They think it is something systemic. My arms are constantly numb and my right arm gets very painful cold and heavy everyday. The diagnosis of Thorasic outlet syndrome was also thrown out there too. Where the arteries in the shoulder are pinched due to reduced blood flow.  
I am getting very frustrated. I'm afraid I will never be normal again...

[PlateletGal]

It doesn't sound like fibromyalgia... at least not to me. Have you seen a Neurologist ?




,

[Fenwaysmom]

I have had other Drs tell me that this could be Fibromyalgia. I don't have chronic fatique, just mainly the numbness and tingling.  Could Fibro manifest itself in this way? The Dr.'s say that it can, but it seems strange to me. anyone heard of it before?

[selmaS]

I never heard of this, but from what I did find so far, it is similar in nature to carpel tunnel.....I would suggest to start another thread with the dx as ur lead.....

If I find ne ething else out I will advise.

Good luck
Godspeed
"selma:

[Fenwaysmom]

May have a diagnosis Thank GOD. Its not really the one that I want, but at least its something. Thorasic Outlet Syndrome.  My test came back abnormal (so the tech has said.) My pulse was completely lost on my right side when my hands were raised. Thats usually when I get the pain. The left side was very weak. When I bring my hands back down, thats when I feel more tingling numbness and painful sensations in my arms. I am having trouble doing everyday things like washing my hair, or doing dishes, reaching up to get something.  My numbness is constant, but pain comes and goes. I've been living with this for 6 weeks. Anyone know anything about it.....    Still have to see the Dr. to confirm it.  THEN  WHAT!

[selmaS]

.....as u found out not all drs are worthy of their diplomas....I was given meds yrs ago for anxiety.....since u had a surgery on ur neck...that's where u should start....how long ago was the surgery, the last MRI? .....I was tested for Lupus and told borderline...whatever that means...also told fibro, chiari and cervical spinal stinosis...and also hashimotos thyroiditis...which my labs do not warrent meds, but the US showed nodules.....I really think ur surgery site is sthe place to start......Good Luck and let me know how ur appoint goes......

Godspeed
"selma"                                                                                              

[Fenwaysmom]

My general doctor tested me for everything under the sun. He checked thyroid, diabetes, and B12 as well as a bunch of other things. I don't have a history of infections and I had no trauma. It just came on all of a sudden & it just won't leave. I had some idiot neuro tell me I had conversion syndrome and it was just anxiety. What a crock of sh--.  He said I needed a psychologist.  I had spinal fusion due to a herniated disk in my neck. Surgery was the only option. I don't know if I was tested for Lupus or not.  My primary is sending me to see a Rheumatologist. I was told that they can diagnose systemic problems or autoimmune problems. I hope its not Lupus. I don't have any type of rash, just numbness tingling, pain and burning.  I am losing hope. why won't this go away? I don't understand?  If it was anxiety, why isn't it gone by now. I am NOT anxious every minute of every day. HELP!!!  What is wrong with me?

[selmaS]

I have a few questions......have u had a history of infections? have u had any traume to ur head or neck?
have u been tested for a thyroid issues?

Y did u have the spinal fusion?

have u been tested for Lupus?

My mom, sister and myself all have fibro, and we all have different symptoms....it will manifest differently as well.Also be aware that chiari is often misdiagnosed as fibro.....find a good dr....get testing and make sure u understand ur dr.....if the dr doesn't fit- get another one till it's a good fit.
keep me in the loop as to how u make out.

Good luck
Godspeed
"selma"