Hi Quix,
I did join the Chiari community the people on that forum are just as kind as this forum and had some good info. I guess right now I am just trying to get as much information as I possibly can.
About the Lyme results which I don't know anything on except what my doctor told me which was some of the ANAS were elevated which doesn't mean I have it but means it could be something else or I may have had it in the past. I still don't understand that but I guess I will ask more about it when I talk to her next.
After I spoke with her her office sent me a letter stating my VIT D is low and I should start taking 4,000 units daily which I will pick up friday and start.
So I guess I will wait for the spinal MRI and see what those results are. I am kind of a get everything done right away type of person so waiting and doing tests and then waiting for results and doing more tests is kinda kiling me. :(
Once again thanks a bunch for taking the time to answer all of my questions.
Krista
I think you should wait and see a Chiari specialist before you go much farther. We have a Chiari Forum here that you might visit.
My six spinal cord lesions were seen about a month after my diagnosis - which my neuro said wasn't a perfect slam dunk diagnosis.
I had one unique O-Band and a markedly elevated IgG Index, so I did have both spinal lesions and a sort of positive LP.
How would she know the Lyme is a false positive?? To be on the safe side I think any positive Lyme should be treated. The folks on the Lyme Forum will definately back me up there!
MS is not associated with an elevated sed rate. But, Lyme can be.
Low Vitamin D should be treated. It's not good.
q
Thanks for info Quix. Did you have any spinal lesions or a positive LP? My doctor is ordering a spinal MRI next. I know that the MRI makes mention of the Chiari a few times and I have starting wondering if the Chiari could be causing theses problems as well.
I'm really feeling confused right now. My Neuro pretty much dismissed the Chiari and my pcp has told me that she suspects ms. My labs came back and she said something about the Lyme test being a false positive?, my vit d was low and my esr was elevated. She said that her next step after the spinal MRI will be a LP. Now I have heard that LPs are not recommended for Chairi patients so this makes me nervous.
I guess like everyone else has already said this is not a simple process and will take a long time to figure out. I just hate the not knowing part.
Thanks for your feedback Quix I really appreciate it. :)
I just want you to know that I was diagnosed with just one brain lesion. My first neuro laughed the lesion off. My good neuro pounced on it like Tony on a mouse. The whole process took three years.
Q
You are def right it seems like it will be forever before they figure out exactly what is making me feel so awful. Thanks for taking the time to read and comment on my post.
Krista
Yes, there's only one finding that could relate to MS. Good luck in getting to the bottom of things. It can be a long journey.
ess
Thanks for taking the time respond to my post. I really appreciate all feedback
Just what it says - single punctate focus of T2 hyperintensity. Since you have one lesion, it's not enough for a diagnosis. :-( You'll have to go in for further tests - a spinal tap and possibly evoked potentials.