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Old 09-26-2016, 02:07 PM
cola1016 cola1016 is offline
Newly Joined
 
Join Date: Sep 2016
Posts: 3
5 yr Member
cola1016 cola1016 is offline
Newly Joined
 
Join Date: Sep 2016
Posts: 3
5 yr Member
Default New here, just looking for some feedback

Hello all,

I'm in what I think is called "limbo land?"

August 3rd I got an MRI with/without contrast done which was ordered by my PCP. I was suffering from a wide spectrum of symptoms that I was worried could be thyroid issues. My PCP insisted my thyroid was fine and when I mentioned my breasts leaking in addition to my constant headaches, he insisted on getting the MRI done. He was suspicious of pituitary adenoma.

I get the MRI done, results come back that I indeed have a microadenoma, but in addition there were lesions of concern.

High T2 and FLAIR signal intensity foci in the white matter, 2 of which occupy periventricular location, one of which (the right temporal lobe lesion) enhances on postinfusion sequences concerning for MS. Neurological consultation and additional MRI brain surveillance are recommended.

So, I see the neurologist, he tells me that my lesions aren't typical of an MS patient so he wanted to do a LP to check for obands. He stated at that appointment if I had obands that I would likely be diagnosed with MS.

Fast forward to September 2nd. I get the LP done. Results come back as follows;

Isoelectric focusing/immunofixation reveals two or more
unique bands in the CSF with no corresponding bands in the
serum. There are also identical bands present in both the
CSF and the serum. This is consistent with intrathecal
synthesis of immunoglobulin and is considered to be a
positive result for oligoclonal bands.

The other results;
IGG CSF 1.2 mg/dL
ALBUMIN CSF 9 mg/dL
IGG SERUM 1170 mg/dL

ALBUMIN SERUM 3830
ALBUMIN INDEX 2.3
IGG SYNTHESIS RATE CSF <0.0 mg/d
IGG/ALB RATIO CSF 0.13
IgG Index 0.44

So today was my followup and he tells me that although I was positive for 1 test (I assume he was talking about the obands) he can't diagnose me with MS or anything else for that matter. So I have to follow up in 3 months to get another MRI and see if there has been any progression.

Is this the typical story for most people? Of course I do not want MS, but I also don't want to be the mystery case. Tired of having symptoms on and off, feeling good for a little while and going back to feeling crappy. It's so frustrating, I just want answers
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"Thanks for this!" says:
Kitty (09-27-2016), NurseNancy (09-29-2016), Starznight (09-30-2016)