Last round of testing was negative for MS

[SOONERMOM]

I just heard from my neuro and all the results were either unchanged/normal or negative for MS.  I had another MRI VEP, and a LP that my back is still sore from(it took at least 3 tries and different needles).  I don't have the copies yet, but was told nothing positive for MS on the LP and everything else was normal.  (He also said the test they ran for Lyme on the CSF was negative.)   I had called our hospital lab and found out that they send out the CSF to the Mayo Clinic and use the most updated method (thanks Quix).  I feel like I have done everything to be thorough and not turn my back on a tricky disease like MS.  I guess I may never know for sure why I have all those WML's in my brain.  I should  probably have another MRI in a year.

I know the only time that I felt improvement was when I was taking antibiotics.  I was looking over my old labs for lyme and it LOOKS to me like they never even did a western blot for lyme the first time.  It says EIA:negative--I am thinking they just ran an elisa even though my neuro specifically wrote for western blot igm/igg.  The lab's web site says they do an elisa first and if it is positive then they do the western blot.  So, I think that the "california lab" may be the first and only western blot that I have had done.

I will see the lyme specialist and keep you guys updated.  I wish there was an ID here that would consider treating me, but unless I make up a story about camping in CT, no doctor here believes that I could possibly have lyme.  It is difficult for me to leave the mainstream medical community, and that is why I agreed to all these tests/retests.  My neuro is still talking about sending me to the Mayo Clinic.  I declined, for now,  because I am hoping that I don't have to see another neurologist again for a LONG time-lol.

Thanks for all of your support!!  I know I have become a better, more compassionate person because of all of this,

Stacey

[SOONERMOM]

I did have one positive test for antibodies to lyme back in March (western blot).  It was actually considered a CDC positive test.  I just can't get any doctors around here to consider the possibility, even though I live on acreage and have had numerous tick bites.

For some reason I was thinking that you were diagnosed at Mayo.  (I might be thinking of someone else)  I have insurance....but it has gotten a lot worse since all this started.  They increased all my copays and they really stick it to you if you go out of network.  I guess I am just not willing to pay thousands to hear some of the same other diganoses that I have already been told.  I have seen an MS Specialist and he didn't think that I had MS, or that I would be considered an atypical case. (I have been to 4 neurologists since 10/07)  I am really glad that I can hear stories like  yours about the Mayo so I CAN make an informed decision on whether to go or not.  That is why this forum has been the greatest help to me over the past 7 months!!  I will definitely be hanging around,
Stacey

[grannyhotwheels]

I guess I should say that sound terrific but now we are back to square one.  You still have symptoms for something and it doesn't look like your any closer to finding an answer.  So for that I will say I'm sorry.  Does this neuro you are seeing specialize in MS?  The Mayo Clinic may not be such a bad idea that is if you have insurance.  I had a very bad experience with them but I didn't have insurance and regardless of what you hear about the Mayo Clinic being able to help everyone it's not true.  They are more than happy to help you if you have money or insurance but not so eager if you have none.

Oh well sorry about that. I sorta got off on my own little trip in the past.  I am sorry that you have no answers but not having clear evidence of MS is sorta of a relief.  Seeing a Lyme specialist sounds like a good idea.  Please keep us posted and just because you may not have MS don't make a difference here.  Once you join this group you are a member for life.  MS or not.  So we will definitely be seeing you.

I'll be praying,
Carol