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Complicated and frustrated

I was dx with atypical ms last year from a ms specialist after a positive LP and evoke potential test after two cases of optic neuritis, but had a negative MRI.   After my condition continued to get worse my doc now says he doesn't think it's ms at all. I have been tested for everything under the sun but things continue to come back inconclusive. Docs keep telling me I'm complicated. Most of them are convinced it's autoimmune but say its difficult. In the mean time I am having a terrible time and things keep getting worse. I just want relief and my life back!  After doing a lot of research I came across arachnoiditis and think I may have this. What should I do? I think docs think I'm crazy now and I just want help.
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Avatar universal
I have been tested for Lyme disease several times since 2008. It's not Lyme. It's not any of the common mimics. I've even been tested for some of the less common mimics. I'm so frustrated
Helpful - 0
1530171 tn?1448129593
Hi Julia.
If you want to save some time and get things rolling fast,
you need to find a co-operative doctor
Order from IGeneX Labs the  Lyme and Co-infection Panel
#6050 and #5090. Get the doctor (DC or ND is acceptable, but check to make sure) to sign the form and his nurse to draw the blood and have it sent to them EARLIER in the week vs later!
You need an LLMD for Lymes and co-infections. Any other Doctor usually is not knowledgeable or not willing (you won't be told this!) to treat you properly.
Only deal with IGeneX, as any other Lab is notorious for mainly false negatives.
Your condition is treatable if it's connected to LD and Co-infections!
Getting the right dx and treatment is a scientific and an artistic (challenge) lol!
Wish you well.
Niko
Helpful - 0
Avatar universal
I was tested for everything under the sun, some of them twice!  My concern is that I'm not doing any treatment now and I'm getting worse. It started with my CNS and now seems to be effecting my ANS. I'm scared and just want help!
Helpful - 0
1530171 tn?1448129593
Hi Juliannep and welcome to the forum.

There are many conditions that mimic MS.
My first suspicion would be Lymes Disease.
Other posibilities include HHV-6 infection ( presentation of multiple
small lesions and many MS like symptoms), Pathogenic Mycoplasma
and other similar underlying infections, all rather difficult to diagnose when using standard tests. Most patients usually go undiagnosed, or worse, misdiagnosed. These are treatable infections!

Check with Dr. Nicolson, he's an expert in this field.
He's available to answer your A/I questions until Dec.6, in this community.

Take care.
Niko



Helpful - 0
434278 tn?1324706225
When I was going through the roller-coaster of diagnostic land, I would go to my GP and ask, do you think it might be this.  And we would discuss whether he thought it might be a possibility or not.  

Have they checked for lyme or other tick borne illnesses?
Helpful - 0
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