No MS but CCSVI

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

Postby sbr487 » Mon Jun 28, 2010 8:25 pm

TMrox wrote:With great sadness I report that the support group in Transverse Myelitis
has permanently banned me from their board.


I was given no warning.

Aparently one or two individuals were very unhappy that I was spreading the news that I have TM and CCSVI.

Ignorance and arrogance kills.


TMrox, nothing new. ccsvi has gone through similar phase. Why dont you consider starting FB group on this?
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Postby zen2010 » Mon Jun 28, 2010 10:21 pm

sbr487 wrote:TMrox, you really rock.

I am curious to know how you came to know about CCSVI?

It would be great if researchers started looking if CCSVI is underlying cause of any other neurological diseases!!!


One of my friends was recently diagnosed “rheumatoid arthritis” which is also a neurological disease. I tried to see on some forums if CCSVI was also a “hot” topic in the RA world but I could not get any feedback.

I really hope that fixing CCSVI can also help for other neurological issues (Parkinson, Rheumatoid arthritis, Alzheimer ….)
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Postby sbr487 » Mon Jun 28, 2010 11:21 pm

Zen,

How are you doing? Any progress?

Cheer,

I hope one day CCSVI Alliance will expand its charter to explore other diseases too ...
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Postby TMrox » Tue Jun 29, 2010 12:29 am

Thanks Cece, I'll continue posting here.

Thanks sbr487 for the brilliant idea. I'll start a FB group for those with CCSVI and who do not have MS. I'll provide further info here.

I might be on my own, but I suspect that others will join very soon.

I find very peculiar that no further research has been done on the link between CCSVI and other demyelinating diseases, apart from MS.

Hopefully that the ongoing trials in Canada, Italy and USA will start unravelling all the implications of CCSVI.
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Postby sbr487 » Tue Jun 29, 2010 1:09 am

TMrox wrote:I might be on my own, but I suspect that others will join very soon.


I will be in that group out of curiosity ...

I find very peculiar that no further research has been done on the link between CCSVI and other demyelinating diseases, apart from MS.
Hopefully that the ongoing trials in Canada, Italy and USA will start unravelling all the implications of CCSVI.


Are any studies planned to find link between ccsvi and other neurological disorders? I have seen Dr. Embry advocating for research in this area.
The ones funded by MSS are still using MS as the main factor. Given that, if they find CCSVI is found in non-MS, will it lead "CCSVI is not unique to MS and is hence not a causal factor" ...
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Postby zen2010 » Tue Jun 29, 2010 1:31 am

sbr487 wrote:Zen,

How are you doing? Any progress?

...


Hi Sbr,

It’s all good!

My ms stopped progressing since I started to care about my CCSVI.
I didn’t go through surgery to fix it; however, I am following a treatment with Chinese medicines which improve the blood flow in my stenosis.
Seems to work pretty well.
Brain fog, tiredness, pain, optic neuritis… all of that is gone
I still have a light walking issue but I guess it will get improved along the time

sbr487 wrote:I hope one day CCSVI Alliance will expand its charter to explore other diseases too ...

Hope it won’t take many years…

sbr487 wrote:Are any studies planned to find link between ccsvi and other neurological disorders? I have seen Dr. Embry advocating for research in this area.
The ones funded by MSS are still using MS as the main factor. Given that, if they find CCSVI is found in non-MS, will it lead "CCSVI is not unique to MS and is hence not a causal factor" ...


Maybe CCSVI is just an ingredient from MS recipe. Means “Is CCSVI alone enough to cause MS?”
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Postby sbr487 » Tue Jun 29, 2010 1:38 am

My ms stopped progressing since I started to care about my CCSVI.
I didn’t go through surgery to fix it; however, I am following a treatment with Chinese medicines which improve the blood flow in my stenosis.
Seems to work pretty well.
Brain fog, tiredness, pain, optic neuritis… all of that is gone
I still have a light walking issue but I guess it will get improved along the time


I am really glad to note your progress ...
Once we are on the right path, +ve result has to follow.
Is there some literature on the medicines/treatment you are taking?
I think you are lucky to be in China where traditional wisdom guides the treatment process ...
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Postby costumenastional » Tue Jun 29, 2010 2:26 am

This is a very interesting thread indeed. I have no brain lesions either. I had 2 in my cervical spinal cord (C2 and C4-5). They kind of vanished after Campath chemo but with no impact on symptoms which remained the same.
Actually i had become a lot worse in the last 18 months.
Anyway, i think that TM CAN evolve to MS. After having numbness for years it hit my left eye and everything went down the slope from thereon. They found 1,2 oligoclonal bands also. I was told it was TM just because it could not be named NMO, MS or whatever just yet.

They unblocked 2 stenoses in my left jug, one in my right and one in my azy 55 days ago.
I must admit that i am starting to feel kind of better in many aspects but i am too afraid to convince myself or update the tracking thread. I ll give it more time but i am fully convinced that TM is the way for a bad MS to start for many of us. There is no doubt in my mind that TM is CCSVI related in that aspect, not to mention that usually TM is just another name they through in the "Possible MS" bucket.

One last thing: it seems that the "liberation" treatment came just on time for me. Right before i done it i was loosing it fast. Now, it feels like not only i ve put some breaks on it but there are actual improvements also! Nothing major but still... that 's a first since dx. I am far from perfect but there is hope. I only say this cause i am not a typical MS case. This is why i was afraid they would not find CCSVI in me. But they did. Big time.
Last edited by costumenastional on Tue Jun 29, 2010 4:09 am, edited 1 time in total.
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Postby sbr487 » Tue Jun 29, 2010 2:55 am

Costume,

With some brilliant people around, it is probably a matter of time before we understand more about these atypical cases and why they dont respond to treatment ... lets wait and see ...
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Postby costumenastional » Tue Jun 29, 2010 3:07 am

I certainly hope so friend. In the mean time, i ll get tested for Lyme also. All in all, i am not planning to be on MS drugs in the near future. I need to know what is wrong with me. There IS a relation between MS and CCSVI as i see it cause there is a relation between treatment and symptoms in my case while chemo did not help even a bit.
TM, MS, Lyme... crabs wont do the trick whatever is going on and that's all they do for us nowadays. Having the power to take things in our hands is wonderful. People with TM will also get some serious help as long as they think out of the damn box.
I am also glad we have TMrox with us.
You are most welcome here friend.
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Postby TMrox » Wed Jun 30, 2010 6:22 am

Does anyone know how to contact the people who were tested in the first study of CCSVI by Buffalo University?

I understand that people with conditions such as neuro-sarcoidosis, epilepsy, Clinically isolated sydrom and 'other conditions' were tested and gave positive for CCSVI. The incidence of CCSVI was higher than healthy controls but lower than those with MS.

Any help will be very much appreciated.
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CCSVI and maybe no MS?

Postby Annbanan » Wed Aug 04, 2010 7:52 am

I have not officially been diagnosed with MS...three white spots on brain (but not in the usual place for MS the neurologists say) and only one banding in spinal tap....I have symptoms but two neurologists said all inconclusive. Have to repeat tests in a year...in the meantime I was feeling bad and decided to go ahead and have a doppler done on my neck veins....'showed a decrease in the venous flow in the left jugular showing a possibility of a blockage'.

I am going to Poland in October.....have decided to take matters into my own hands because I can't sit around waiting.....
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Postby aliyalex » Wed Aug 04, 2010 4:27 pm

Annbannan- good for you to not wait around.

I was diagnosed in 2003 with MS after finding 1 lesion at C4-5. No differential diagnosis. That went on for years, one lesion only, nevertheless the illness progressed steadily. the neurologist was insistent about Novantrone as he saw my walking beginning to deteriorate.

I was not comfortable with the pharmaceuticals offered. I was tested for lyme via Quest, it was negative. I started LDN and stopped the aggressive progression in its tracks...for 8 months. Then I was told that a few others on LDN who began progressing had a diff dx of lyme, but a special lab in Ca had to do the testing bc/ they are more sensitive to the lyme bands. I tested clearly positive. This gave me a sensible reason for the autoimmune rxn and supported my theory to strengthen, not suppress/modulate the immune system. As I began certain antibiotics, specific neuro symptoms got worse, which to me showed a direct relationship. I had die off and my body was not able to detox well. i started using more alternative treatment, which was gentler to detox.

then i went through a series of tragedies: Katrina, deaths, a 1500 mi move, divorce, i'll spare you the rest.

I wondered if i had the determination to keep going. I literally gave myself permission to die. Instead I restarted a very aggressive treatment against opportunistic infections. Stuff started coming out of my face, arms, armpits, blisters were coming out of my thighs. Then I found CCSVI and it made so much sense. i went back to my lyme doc, who is brilliant leading edge thinker, I talked to him about CCSVI and a possible connection of infections possibly effecting stenosis. He told me that the "bugs" live in the lymph system. it is dense there and they jump to the jugulars where there is rich blood. then i realized i was having die off around the lymph areas!

i am scheduled for venogram and hopefully plasty in Albany at the end of the month.

Sorry for the epic novella, but i just want people to keep searching, keep going. We can live without so much suffering and hopelessness. This forum is proof of recovery. So many survival stories. i wanted to give up many times, but i didnt. just got more determined. i am at EDSS 7.5, down from almost 9.0.

just wanted to give back to people who have given me so much. aliyah
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Re: No MS but CCSVI

Postby CureIous » Wed Aug 04, 2010 4:35 pm

Fliege wrote:Hi,

do somebody know if there is somebody without MS but with CCSVI on this board ?
Ist there a special site / forum / facebook site for this people ?
Or how many there are till now ?

fliege


I personally know of at least 5 people who were treated for CCSVI without a definitive MS diagnosis, I believe most were CIS though. i.e. it's not unheard of. What I'm getting at (and not touching on TM because there's stellar commentary above), is I can't see CCSVI applying to anyone unless there's some kind of symptom complex which drives one to look that direction anyways, and most of those symptoms would fall under the umbrella of MS, irrespective of course of any definitive diagnosis for MS or anything else.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Salvatore24 » Wed Aug 04, 2010 5:50 pm

Myself:

Minor but noticeable symptoms for the last 3-4 years. Tapered off for a while, coincidently when I changed my diet and started training 6 days a week. Came down with a cold August last year, ended up paralyzed from my waist down, unable to function (only my lower half was affected). Diagnosed with Guillain Barre or Transverse Myelitis. Symptoms increased & became worse since Jan this year (blurry vision, pain, tingling, L'Hermittes).

Went to a neurologist and had another MRI of my brain & spine in February.....nothing. This highly regarded neurologist then said to me "Your MRI's are clear, I don't know what is causing all these problems, good luck". $1000+ between MRI's and the consultations, and he couldn't tell me sh1t.

Scanned for CCSVI late Feb, result was positive. Treated for CCSVI in June. Nothing dramatic the first few days, maybe a touch less fatigue (I was taking it really easy though). Then a few days later, no more fatigue, no more cog fog, no more pain/numbness/tingling that happened all day, everyday since February. No blurry vision, which ocurred at least 3-4 times per week without fail. And to be perfectly honest, I was very skeptical, and not expecting anything to change, whatsoever.
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