I don't have Guillain-Barre, but...

[dianeschlicht]

They do know I have some sort of neurologic dysfuncion. Trouble is, they don't know what or why!!! In all likelyhood it was caused from the virus I had 3 weeks ago. The shortness of breath is caused from diphramatic paralysis. I have very tired muscles and no energy or stamina. Sure hope I find out what this is before our WDW trip! Maybe I'll have to be one of those folks who look fit but has to use a wheel chair at Disney!

 

[Jeafl]

I'm really happy to hear that you don't have G-B. Diane. Hopefully it's just a weird virus that will will run its course and you'll feel better soon. Please keep us updated.

 

[Talking Hands]

Diane,
Sorry to hear this. If you do need a wheelchair or ECV in Disney you will be in very good company. Check out DISabilities and get some really good tips.

 

[Kitty 34]

I'm glad to hear you don't have G-B, Diane. I sure hope they find out what's wrong with you real soon so you can get on the mend before your trip!!


At least I have til next June to get my neck "fixed" thru therapy so I can get around WDW with little pain and difficulty!

 

[damo]

Diane, did they check for West Nile?

 

[Tinks]

I hate to say this, but I was thinking West Nile Virus as well. Have you been tested for that??
Some people also have a very bad run with Epstein Barr Virus. Hope you are up and peppy soon. Take good care of yourself and ((hugs)) for all you've gone through these last few days.

 

[Dan Murphy]

Good to hear the negative on the G-B, Diane, but sure hope they are able to nail it down. As mentioned, West Nile sure is prevelant up here. Liz's DD, Laura, had her illness for quite some time, and fianlly diagnosed at WN. My very best to you, Diane, hugs, prayers and good thoughts for you.

 

[ead79]

That's wonderful news that you don't have G-B, Diane! I'm sorry the doctors don't know exactly what it is. The other DISers suggestions are good ideas--West Nile and Epstein Barr. I've actually had Epstein Barr, so I can relate my experiences from that if you get that diagnosis. {{{HUGS}}} continue for you.

 

[The LK 4]

Diane, I hope the worst is over and everything starts getting better for you now! Don't over exert yourself - take it easy and rest up for your upcoming trip.

 

[CathyCanada]

I'm glad you know what it isn't and hope they find out what it is and get you the right meds to fix it soon, Diane!
Take care,
Cathy

 

[dianeschlicht]

They didn't say anything about West Nile, but it would be very rare for anyone other than a high risk patient. They did test for Lymes, but it was negetive.

THe strange thing is the blood test results. I have an "elevated hemidiaphragm" which is basically a paralysis of the diaphram. That is what causes the shortness of breath. I also have neurologic damage, especially from the C5-6. Not sure why. I have neck pain etc. The blood test results were the confusing part. My platelets are HIGH and my CK is LOW!

 

[Serena]

None of that makes sense to me. I just hope it's temporary Diane.

 

[Credit Man]

Get well soon, Diane. Hope to see you at WDW in good health and going strong.

 

[gina2000]

Diane....I hope they figure this out SOON. And I hope it's temporary and you can enjoy your vacation, your new home and all the things you hold dear in your life.

 

[PamOKW]

Sorry to hear you're not feeling well and they can't seem to pinpoint and fix it for you. Going to WDW is a great idea, though. That Florida sunshine and pixie dust can often provide a miracle cure.

 

[dianeschlicht]

Originally posted by PamOKW
Sorry to hear you're not feeling well and they can't seem to pinpoint and fix it for you. Going to WDW is a great idea, though. That Florida sunshine and pixie dust can often provide a miracle cure.

I'm counting on that, Pam! My stamina is just so low!! I do see both the pulmanary specialist and the neurologist before we go, so maybe I will have some help by then.

 

[helenabear]

Diane, while I am glad that you do not have GBS, I am just so sorry that they don't know what is wrong yet. I pray that they find the answer soon and that you are feeling much better soon. And who knows, an ECV at WDW could be fun Take care and {{{hugs}}} to you.

 

[DonnaW]

Hang in there, Diane! I sure hope they can figure out what's going on soon, and you start feeling better! A hug for you.....

 

[joeokw]

I am glad you going to see a neurologist. I am a RN and has worked as a nueroscience RN for a long time. There many different neurological syndromes out there . you said C5 -C6 damage. correct? The symptoms of a C5- C6 damage can be numbess/ pain in the hands or arms. I do not undestand the blood test for "hemidiaphram". Your diaphram is control by the the Vagus nerve which is C-10. I hope you neurologist is good. They should do some specific blood tests.. A MRI, CT scan EMG, Dopplers, .. at the very least. Are you on any steriods? By the way.. for info.. Guillen Barre is definatley curable. it is just takes time.

 

[kdibattista]

So sorry you are going through this... thoughts and prayers are with you!!!