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I hope this isn't bad Netiquette, but rather than rewrite what I've already written, I'm going to post a link to the blog post in which I describe the current unsettling confusion regarding my diagnosis.

Please forgive any breach in virtual politeness, and I would highly value any diagnostic opinions or ideas ventured by the learned and erudite inhabitants of this board...

http://www.wheelchairkamikaze.com/2009/ ... doubt.html

That has to just be a mind----, but I must say your humor is endearing as hell. Good luck to you Marc. I don't know what else to say since you are obviously on a mission of discovery again. Give it hell; I know you will.

what could it be marc?

Marc,

Wow! is all I can say. I hope they figure out what it is soon.

My husband and I watched your quest for bagels and got a chuckle. You have and inspiring sense of humor.

Hope you find out something soon.

Cat

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.ajnr.org/cgi/content/full/20/5/886/F1

another
http://www.ncbi.nlm.nih.gov/pubmed/1694 ... stractPlus

You'd need venograms...

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

BTW I only know about it because of the effort I have put into the vein thread. I have run into DAVF repeatedly, it can look just like MS and there was even an autopsy report of three people with DAVF who'd died, one of those 3 had an MS diagnosis, the other two some other dx. Obviously none had been correctly diagnosed in life.

It is not easy to diagnose DAVF but it is to an extent fixable (they can remove the fistula through various endovascular means though the healing that takes place from there is somewhat limited--like a stroke survivor--c'mon stem cells), so if it were me I think I would make sure they prove it is not that to me before I let them hit me with something else.

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.

I just read this

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.

http://www.nature.com/nrneurol/journal/ ... 09.31.html

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...

http://www.med.nyu.edu/cbi/facilities/7tesla.html

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.ajnr.org/cgi/content/full/20/5/886/F1

another
http://www.ncbi.nlm.nih.gov/pubmed/1694 ... stractPlus

You'd need venograms...

I discussed the possibility of a dural fistula was my doctors, and was told that the position of my C. spine lesion makes it extremely unlikely to have been caused by a fistula. The lesion is at the very top of my C. spine, at the cerebromedullaryJunction, and lesions caused by fistulas are almost universally found lower in the spine.

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

I've had C-spine and thoracic MRIs done repeatedly, and the only lesion that shows up is the one at the very top of my C-spine, which can just as easily be seen in the brain MRI that I posted on my blog...

thanks for the response...

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!

mrhodes40 wrote:
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.

Actually, the only drug that ever did help me was intravenous steroids, to which I'm surprisingly sensitive . I did a 10 day course of steroids that really knocked my disease back on its heels, albeit temporarily. Unfortunately, it also gave me avascular necrosis, and I now have that incredibly painful condition in both hips and both shoulders...

I'm so sensitive to steroids that even a shot of cortisone given to relieve the pain in my joints temporarily gives me some relief from my neurologic symptoms. This is what has the doctors looking at adrenomyeloneuropathy...

I've had MRAs done, which showed no vascular abnormalities in my CNS, but I'm not sure they would reveal venous insufficiency problems...

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...

http://www.med.nyu.edu/cbi/facilities/7tesla.html

I haven't had a 7 T MRI done. That would be interesting, and possibly of great value. Thanks for the suggestion...

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!

I wasn't in the rituximab trial, I just did the drug off label. My neuro's decided to reevaluate my case again after several years, because the rate of my physical progression didn't jibe with my completely stable MRI results. Throw in the clear spinal taps, and the picture gets very cloudy indeed.

I've doubted my diagnosis almost from the outset. I've been tested for multitudinous other diseases through the years, but nothing has come back positive. There are other are odd aspects of my case, as I have definite endocrine involvement (low testosterone,, hypothyroid, low cortisol), as well as some vitamin B1 deficiency.

My personal feeling is that I have some sort of systemic autoimmune syndrome, with CNS involvement, brought on by genetic predisposition in combination with various environmental triggers,...