My strange journey with MS and CCSVI !!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

My strange journey with MS and CCSVI !!!

Postby ozarkcanoer » Wed Jun 02, 2010 1:03 pm

I've had a lot to think about the past 2-3 weeks since my trip to Buffalo and BNAC. The doctor at BNAC who gave me my neurological exam said I have "atypical" MS and suggested a couple of other avenues I should follow. Maybe it could be vasculitis or maybe I should get an MRI of my neck bones. Maybe I have Lupus, etc etc. I didn't think much about this but held it in the back of my mind. I am supposed to be mailed a written neurological report by the BNAC MS neurologist but I haven't received it yet. I am anxious to see what she has to say.

This morning (Wed June 2) I had a consultation with a neuroradiologist and professor, a top doctor at the Washington University School of Medicine. This man was very kind to me. he agreed that my BNAC MRV shows severe stenosis in my right IJV at C1-C2. He said that he didn't think angioplasty would fix the problem, that there would be a high chance of restenosis. And he doesn't want to consider stents at this point in time. He also told me he doesn't know if opening up the vein would help me. He also told me he couldn't make any statement about the "flap" that was detected by the BNAC doppler ultrasound.

He also told me that he showed my brain MRI to several of his colleagues, including neurologists, who all agreed that the lesions in my brain (my MS neurologist told me there are about 40) are "atypical" of MS. So I asked him if I should get a second opinion about my MS and he said a nice firm "YES". I already have an appointment with another top neurologist at the School of Medicine (not an MS neurologist) in early July about my headaches. My neuroradiologist praised this doctor and told me she was a good choice.

On another note, my neuroradiologist did say that he and several other IRs and neurologists at the Wash U Med School are going to do a CCSVI trial and that I might be able to participate in some way. Maybe as a control if I don't truly have MS !!! He said I am NOT too old, LOL. My MS neurologist has always said that I am too old for any drug clinical trials !!!!

So I'm in a little bit stunned. BNAC found that I have CCSVI. But at the same time the BNAC neurologist and my local neuroradiologist are both suggesting that I might have been misdiagnosed with MS !!! So 2 1/2 years of Copaxone injections ??? 2 1/2 years of believing my fatigue is due to MS ?? And my headaches and all my other pain ?? All these strange symptoms of burning, tingling, hot-head... what can be the cause of these terrible symptoms ? I am going to make an appointment with my PCP, plus I have an appointment with a different neurologist (NOT an MS neurologist) in July. So every day I do a Copaxone shot I have to wonder why !

I am just stunned. I have CCSVI but I may not have MS !!!!!!!
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Postby BooBear » Wed Jun 02, 2010 1:16 pm

Wow!

First off, how wonderful and empowering it is just to have this information. It sounds like you are in good, solid hands now. I am delighted for you!

MS is a complicated disease. For all we know (right now), it may be a mix of genetics, environmental and blood flow issues that cause a manifestation of MS versus ALS or any disease. Look at it this way- you may very well be one of the lucky ones!

I think the more we learn about CCSVI the more we will find it may influence other disease courses (both within and outside of MS). Keep us posted!!
Three veins angioplastied.  One renewed life.  
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Postby mshusband » Wed Jun 02, 2010 1:36 pm

I hope this doesn't sound the way I think it's going to (because I really just want to understand what you mean) ... but how can you have 40 lesions in the brain and not have MS?

40 = multiple to me ...
lesions = still mean sclerosis ...


Very strange. I hope you figure it out.

Did you figure out what "flap" meant yet?
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Postby ikulo » Wed Jun 02, 2010 2:03 pm

mshusband - that is exactly what I was thinking. multiple lesions = multiple sclerosis. Besides, i've never heard of a "typical" case of MS, considering each case is so different :)

Also, just curious, but why did the doctor think that angioplasty would not fix the stenosis (i.e., it would re-stenose)?? Was it the location? severity of stenosis?

All the best!!
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Postby ozarkcanoer » Wed Jun 02, 2010 2:07 pm

The doctor/neuroradiologist I saw this morning said that the lesions do not look "typical" for MS. I don't know anything else. I hope this new neurologist I will be seeing in July might be able to clarify this.

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Postby LR1234 » Wed Jun 02, 2010 2:34 pm

Ozark, I am seeing a new neuro tomorrow for the same reason.

I have also been told that my lesions on my MRI are not in the typical place for MS (had one last year). I also had an MRI a week ago and the radiologist didn't even flag up that I had MS!?? He said my MRI was normal.

I do have a lesion on my spine and have had a Positive LP so maybe this new neuro will diagnose me with MS still.

I have CCSVI, maybe thats all we have???

EDIT:
I take that back...went to see new neuro today and apparantly lesions are typical of MS (radiologist was wrong). Just wanted to add this neuro was awful! He literally lectured me for an hour on CCSVI and how its all rubbish and how LDN is rubbish, How evening primrose oil and diets are all rubbish and how anyone touting any of the above should be put in Jail. He also told me the new oral drugs are coming out next year and they will reduce my relapses by 60% he then said the only problem is a risk of herpes infection or something! Oh and he told me the story of Cari Loder and what happened to her and how these treatments are no different. Oh and he said that i can't have the one thing I was asking for which was access to IVIg apparantly it is not available in the Uk. This neuro is best mates with Alastair compston and works closely with him....perhaps I touched a nerve....
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Postby sofia » Wed Jun 02, 2010 2:45 pm

I think there is something about this typical for ms. On my scans the radiologist always states typical of ms describing the leasions. PLM infections also turns up as leasions on mri, but they are different, and stands out from the ms leasions neur explained to me.

I think it is something about shape, and where they are as well.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby Lyon » Wed Jun 02, 2010 2:46 pm

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Postby StentorKate » Wed Jun 02, 2010 2:52 pm

Ozark - this might be something to look at before you go to the second neurologist. I found it really interesting because I have some funky artery thing happing in my neck - over and above the CCSVI

http://www.thisisms.com/ftopic-10680-da ... sc-30.html
Check out Nunzio's post from Mon May 31, 2010 6:50 pm.

Might be something else to investigate!
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Postby patientx » Wed Jun 02, 2010 3:25 pm

Lyon wrote:MANY things, including migraines, can leave lesions on the brain and evidently there are also several size and shape lesions which are unique to the different "types" of MS.

From what I've seen Dr. Claudia Lucchinetti is in the forefront of MS lesion research and investigating her past work would probably explain a lot.

I haven't done it yet but I'll bet searching "Dr. Claudia Lucchinetti lesions" on google images would be a quick way to see some MS specific examples.


I was going to write something similar to this. The location of the spots seen on MRI, i.e lesions, is used to help rule out the differential diagnoses for MS, things like vasculitis. But it seems reading MRI images is sometimes more of an art than a science, and radiologists and neurologists don't always agree on their interpretation.

Sometimes the "multiple scars" translation is taken way too literally.
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Postby ozarkcanoer » Wed Jun 02, 2010 3:32 pm

My current MS neurologist is considered to be top-notch. And he suspected that I have MS based purely on my first MRI back in 2006 !! I didn't have an LP at that time. I simply didn't believe him that I have MS. But after the lumbar puncture in Jan 2008 he said it was positive and I must go on a DMD. I thought that was it, finito, the end of the road. I am very confused. BTW, the neuroradiologist I saw is going to send a report to my old MS neuro and this new neuro I am seeing in July. "here a neuro, there a neuro everywhere a neuro neuro", LOL. I wish the doctor I saw today was my neuro, but he does brain surgery. His title is "Professor of Radiology and Neurological Surgery". He is so much more empathetic than my MS neuro.

ozarkcanoer :(
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Postby Lyon » Wed Jun 02, 2010 4:18 pm

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Postby prairiegirl » Wed Jun 02, 2010 5:27 pm

Those lists of differential diagnoses are good reminders of how difficult it can be to know what one is definitively dealing with. As Loobie said in another thread, "it's obvious no one knows enough about this disease to be super confident recommending ANYTHING". Hope some answers are coming soon... :?: :!:
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Postby shye » Wed Jun 02, 2010 6:11 pm

Ozarkcanoer-
I also have the numerous brain lesions (but no spinal lesions)--the radiologist reading the MRI concluded could be microvascular problem, or demyelinating disease. My ostseopathic dr ran all the cardivascular tests on me after the MRI, and all was perfectly okay. NeuroOpthalmologist says is MS.
Neurologist also said "could" be MS, but "could" be microvascular--yet he said we have lots of medicines, come back when your symptoms are a bit worse, we can then help you--and he is head of prominent MS clinic in NY--so clearly he was thinking MS (and he has since shown he is not a fan of CCSVI).
--but interestingly, my MRI and his observations about my lesions were prior to CCSVI hitting the news-- I see the radiologist's report as pretty much saying MS is CCSVI---that is rather, the symptoms we call MS, since NO ONE knows what MS is!
Then, a bit later, I was helped SO incredibly by Chiropractor adjusting the Atlas--just confirmed to me that CCSVI theory probably valid, but don't always need venoplasty to help correct it--I have had a number of severe head and neck injuries, going back years.
I am not "cured", but doing so incredibly much better: Makes me think so very much is unknown still, even with CCSVI, and that we get catagorized too easily into slots, and then of course any thoughts that something else could be going on just stops.

So, at least now you are on a path of more possiblities--a good thing I think.

I have seen many of your posts, and identify a lot with what is happening to you--please keep us posted. I am especially interested because I have the numerous lesions also. I immediately stopped seeing neurologists--i was to go back with the medical records from my Optic Neuritis, and knew from what the Drs said that they would then officially make it MS---I did not want to be frozen into a (possibly wrong) catagory, or pushed into using meds. At any point that I might find I need their services, will just make an appt and bring the ON info with me. Instead, for now, am using lots of alternative healing modalities, including Inclined Bed Therapy, EDTA chelation, chiropractor, diet, B12 shots, nutritional supplements-- and keeping many of the worst symptoms I read about here at bay--worst is the underlying fatique--never really get rid of that.

But in my searchs for answers did just find I am heterozygous for H63D mutation--and my osteopathic doctor has for a long time felt I had porphyria, but tests were always inconclusive--I now see that Hemachromatosis and porphyria often hand-in-hand, and this could explain a lot of "MS" symptoms. Am now going to explore both these diseases with specialists.
So, who knows where the numerous lesions are from--I am at this point not willing to label, will just keep looking for any possibilities, and work on each to see how much contributing to what has been happening to my body for years now, and how much this new knowledge i keep getting gives me insights to help the healing.
Anyway, all best wishes! and please keep posting--thanks
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Postby patientx » Thu Jun 03, 2010 7:50 am

ozarkcanoer wrote:My current MS neurologist is considered to be top-notch. And he suspected that I have MS based purely on my first MRI back in 2006 !! I didn't have an LP at that time. I simply didn't believe him that I have MS. But after the lumbar puncture in Jan 2008 he said it was positive and I must go on a DMD. I thought that was it, finito, the end of the road. I am very confused. BTW, the neuroradiologist I saw is going to send a report to my old MS neuro and this new neuro I am seeing in July. "here a neuro, there a neuro everywhere a neuro neuro", LOL. I wish the doctor I saw today was my neuro, but he does brain surgery. His title is "Professor of Radiology and Neurological Surgery". He is so much more empathetic than my MS neuro.

ozarkcanoer :(

I would have thought the LP results would clinch the diagnosis, too. It will be interesting to hear what your fourth opinion thinks.
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