ANSWERS!!

[SOONERMOM]

This is for all you limbolanders....don't give up on finding out what is wrong with you!!  I finally had a test come back (very) positive and it was for Lyme.  My neurologist told me that "there is no Lyme in Oklahoma" and begrudgingly ordered my first test which I had run at my local lab.  When my results came back negative, I thought one more thing ruled out.

Recently when my husband started having a few of my same symptoms, I was encouraged by a few people that I met on this forum to spend the $195 for the same test through IgeneX lab in CA.  I honestly thought I was throwing away (more) money on my quest to find a diagnosis.

I don't think my GP was prepared to read my results and honestly I don't think he has done so before now.  I was unprepared because I had really been thinking MS and hadn't looked into much else.  He wants me to have a spinal tap done to rule out anything else because he thinks I could have 2 things going on--he didn't SAY MS, but he said autoimmune and then talked about the O-bands???  I hadn't seen him since October and I think I overwhelmed him with my numerous and CRAZY neurological symptoms.  He told me it was a little like CSI-haha.

He also added that my "diagnosis" (Familial Hemiplegic Migraine) from the last neuro was WAY down on his list of things he thought was wrong with me!!hehehe  A little---no a LOT of vindication for me!!

Anyway, please don't any of you give up on obtaining a diagnosis.  WHATEVER it may be.  I know each of  you has something wrong going on or you wouldn't be here on this fourm!  You have to keep believing in yourself.  I have seen over 6 different doctors and basically NONE of them got it right!!  

I am so grateful for all the advice and comfort I have received here!!!!

hugs to all,

Stacey

[santana8]

Hi, It is Santana,
If you don't mind telling me what were your symptoms? Did you show lesions of brain MRI and what was the results from your spinal tap? My Neuro said he tested me for Lyme, but I have read that a lot of the Lyme test  are not always correct. I would really be interested in hearing your symptoms and test results again.

Thanks
Santana8

[wingnut19]

Stacey:

Like Suzanne said, I don't really feel comfy with a congrats, but.....you know what we mean....   :)   It must be 'some' relief having answers and VINDICATION!   In the same breath, it's kind of scary to me that 6 doctors got this all wrong.....WOW!

Roxy:  Welcome!  I am glad you took my advice and came over to this forum to talk to these beautiful people.....Take care
Tammy

[RoxyDavis]

I would like to also say congratulations on a diagnosis, Please..Please...Please look at my post and if my symptoms sound like yours,please contact me! I live in PA and somebody on another forum suggested Lyme Disease to me because PA is a Lyme Disease epidemic area, my neuro thinks it's MS and im trying to get as much feedback from anybody as i can.
RoxyDavis

[Want to feel well!!!]

CSI: Lyme Division!!  Way to go!!!

Wow.  You must really feel vindicated.  SOOOO happy for you...SOOOOO happy!

Wanna

[CtResident]

Congrats on finding another clue! Vindication feels oh-so-nice.

Now, about your dh and you having similar symptoms. You now have the good/bad fortune of having a spouse who can walk in your shoes.

I don't know if congratulations really is the right thing here, but you know what I mean!

Hope you BOTH feel better soon.

Oh, and when is your LP????

Suzanne