Nevertheless, T2 lesions fail to depict the whole story of MS, and other MRI markers need to be defined and validated to understand the accumulation of disability in the long term. These markers include the determination of spinal cord pathology, general and regional cerebral atrophy, and damage to normal-appearing (on MRI) brain tissue, especially the gray matter.11 How these features can be integrated into a unified model remains to be established, and their inclusion should depend on the type of disability to be predicted. For example, spinal-cord MRI features are clearly needed to predict changes in currently used disability scales, whereas cerebral MRI changes are more suited to predict cognitive impairment.
mrhodes40 wrote:Marc I am so sorry that you have to go through the process we all hated called "diagnosis" again! Geez.
Have you been checked for dural arteriovenous fistula? that one can maybe be fixed...
Here's a paper about 2 people with that issue
http://www.ncbi.nlm.nih.gov/pubmed/1694 ... stractPlus
You'd need venograms...
peekaboo wrote:Hi marc -
i went to your site and saw your brain mri's you did not mention any other mri's aka cervix or spinal. I am ppms with lesions in the brains (dawsons fingers very clear) and on the spine, It started on my right side and now my left leg in weakening and am a wheeler as well.
I will have to get my honey to raise the top of the bed 6" I am willing to try anything
I am very impressed with the CCVI research and supplement research as well. I think that the human body still holds many mysteries we havent uncovered and it will take many approaches to figure it all out. Our bodies are wonderful "machines" where we take for granted in a healthy body the various systems are co-dependant or symbiotic.
enough all ready...Holly
One thing that makes that a seeming possibility is that the drugs you have used have not helped, ie Sjogrens and sarcoidosis are other inflammatory diseases treated with steroids, you know? the steroids and stuff should have helped if that was it.
OTOH a DAVF is unaffected by steroids, unaffected by anything really except repair.
dignan wrote:Marc, I'm sorry to hear about the diagnosis turmoil. For a second I thought, great, maybe you have something more easily treatable! But sounds like that's not the case.
The only thing I can think of is: have you had a 7 tesla MRI scan? I know you've had many MRIs, and you sound as though you've been leaving no stone unturned, so perhaps you've already had one. If not...
Smilingface wrote:Wow is right. All I know is ---- you will help your doctors figure it out.
From my first forum encounter with your story I was always uncomfortable with your clear spinal tap. Our clinical presentations were similar. At age 42, I began having right arm weakness and right leg weakness. I have two non-enhancing cervical lesions (C4-5). Our rate of progression has been different but we know that is the nature of the beast.
My doctor clearly said without positive Oligoclonal bands he could not be positive that I had PPMS. So I had my spinal tap about 8 months after my PPMS diagnosis. After the results came in, my neuro sent me a letter that said "Now I am absolutely certain you have MS"
Now I'm thinking that's why they must have put you through multiple spinal taps. I wonder why now have they decided to keep looking. Do you think it had anything to do with the rituximab trial?
Good luck. They will figure it out because you will make them!
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