How come this forum seems to have died out?

[daniel]

How are people doing after their treatments so far?

Is the CCSVI procedure still being performed anywhere in north america or europe still?

Any new advances?

[dlynn]

Hi Daniel,
How are you, have you had the procedure? I don't know who is still performing it but I'm hopeful even though it's been so quiet here lately.
I've had the procedure four times and after each one, I felt so much better, balance, strength, stamina, less pain... But now I have scar tissue in my
lJV and my m.s. symptoms returned following my last procedure. In the meantime I've been taking ldn and for me the benefits are amazing.

dlynn

[cheerleader]

Hi Daniel---

Many of us are over on Facebook now.
https://www.facebook.com/CCSVI-in-Multi ... /timeline/

The research goes on ---the ISNVD meeting is at the Academy of Sciences next year in NYC!
http://www.isnvd.org

Jeff is now 6 years out from venous treatment, with a reversal of disease....his gray matter is now normal, his spinal lesions have shrunk, and he has had no MS progression. He's still jogging and working full days, 8 1/2 years past diagnosis.
http://ccsviinms.blogspot.com/2015/09/celebration.html

I think that treatment has gone more "underground" since the pushback....but it's still being done in north America, Europe and other places. And, of course, we're waiting to hear results from Dr. Zamboni's huge double blinded Brave Dreams study.
Hope you are well!
cheer/Joan

[MrSuccess]

although it might seem that way ...... I doubt very much that this is the case.

As RL'er has pointed out ....... there has been a shift to a different social media ,
by some TIMS people.

MrSuccess is pleased to see that the CCSVI story is now much more low key.

For a time ..... things were getting out of hand. We now have reached a much
more steady and calm path of learning about CCSVI.

for the record ........ MrSuccess continues his 100% support for both CCSVI and
Dr.Zamboni.




MrSuccess

[daniel]

thanks all for the updates!

joan, really glad to hear jeff is still doing great!! =D

I'm currently being hit by a heavy relapse and considering looking for another angioplasty procedure (last one was in albany in 2010...)

does anyone have any doctors I can look into? (im in Toronto,Canada but willing to travel...)

[daniel]

Hi Daniel,
How are you, have you had the procedure? I don't know who is still performing it but I'm hopeful even though it's been so quiet here lately.
I've had the procedure four times and after each one, I felt so much better, balance, strength, stamina, less pain... But now I have scar tissue in my
lJV and my m.s. symptoms returned following my last procedure. In the meantime I've been taking ldn and for me the benefits are amazing.

dlynn

sorry to hear about your symptoms returning dlynn =(

did the doctors recommend anything to prevent restenosis after the procedures? or did you modify your diet/exercise regime yourself or anything?

[cheerleader]

thanks all for the updates!
joan, really glad to hear jeff is still doing great!! =D
I'm currently being hit by a heavy relapse and considering looking for another angioplasty procedure (last one was in albany in 2010...)

does anyone have any doctors I can look into? (im in Toronto,Canada but willing to travel...)

Daniel--
I'm so sorry you're having a tough relapse right now. Make sure your vitamin D levels are good, and give yourself lots of antioxidants---fresh fruits and veggies and a milk thistle supplement to raise glutathione levels. Get plenty of sleep, too.
Hang in there!

Closest docs to you who have CCSVI experience would be Dr. Sclafani in Brooklyn and the Rhode Island Vascular clinic.
http://www.healthgrades.com/physician/d ... fani-y2rn3
http://www.rivascularinstitute.com/medi ... vi-program

Jeff and I remain convinced it takes more than venoplasty--it takes a complete lifestyle.
http://ccsvi.org/index.php/helping-myse ... ial-health

Matt Embry and MS Hope is coming to Toronto---you can meet him and talk to him for FREE---get some ideas and inspiration.
September 29 7:30 PM info here: https://www.facebook.com/teammshope?sk=events

take care of yourself,
Joan (cheer)

[1eye]

Tonight I went to the movies with Suzanne. At first we were the only ones there, and before showtime we were joined by 2 women, one of whom wanted to ask me about my wheelchair. I only use it when the walk is long or Suzanne's in a hurry. I am slow on foot, but my PSW and I went on my usual ride to the railroad bridge and back, her on the big Trek and me on my recumbent WhizWheels Tour II tricycle.

Anyway, at the movies we found the other woman has MS, had a failed test for CCSVI in Montreal, better luck in Barrie, CCSVI in Albany, and follow up in Barrie. Exact same as my experience. Amazing. Plus she turned down the Freedman chemo, etc. and is on FTY720, which I would be on, except for the interference of Dr. Freedman, and the walking drug, and other stuff. I told her about Biotin. She is still walking with a cane, which I am convinced I would be on if I had been allowed FTY-720. She lost one major symptom after the CCSVI, permanently. She is still smiling.

I have still not progressed, and would call myself RR and not SPMS, if it were not for neurologists. I walk slowly and not very far with a walker. But I can do 15 km on my trike, good pace, no stopping, on a hot day.

So don't let anything stand in you way. See Dr. Sclafani if you can.

Me on beach wheelchair in Myrtle Beach, SC, Jan 2015:


View from hotel balcony, Myrtle Beach, SC, Jan 2015:


Stars, at NAC, Ottawa, 2015:


My TerraTrike before overhaul, 2015:


Me being pushed in beach wheelchair provided by Myrtle Beach police department, Jan 2015:


Suzanne on bench in park, SC Jan 2015:

[daniel]

thanks for sharing 1eye =)

have your veins stayed open after the angioplasty?

[1eye]

thanks for sharing 1eye =)

have your veins stayed open after the angioplasty?

I think right is still closed, as he couldn't fix. Nerve crossover means left disabilities, left deformities, no guitar. Bad heart from delayed mitoxantrone heart attack, high blood pressure due to too much cholesterol, should not have used high ldl whey powder. You can get high hdl (which you need) from almond butter.

Left side is better for thinking and logic, thank goodness. Right side is emotional control (I have pseudo-bulbar affect, have to take strong antidepressants).

On trike ride yesterday averted bladder accident by going off trail, taking off clipped on shoes, standing up from very low trike and having a whiz. They don't call them WhizWheels for nothing. Boy was I full. Could not have done that without sit-to-stand exercises and biotin. Before biotin I could not get any muscles back.

Here's some recordings: Three I wrote words and music, one just chords (tune by Kathleen Johnson, words by Dorothy Parker). One is a Bruce Cockburn song.

Mail Order Love Song http://bit.ly/1JPiqtS
Indian Summer http://bit.ly/1LfoKZt
Creation Dream http://bit.ly/1K1tO2Q
Your Number One http://bit.ly/1OscTdO
The Visitor http://bit.ly/1NdWgnk

[daniel]

How much biotin are you taking and where do you get it? sorry for brevity, difficult to type

[1eye]

You can get it from many places. I believe it's made by culturing e. coli, but I'm not sure. It's produced by some gut bacterium (they all die when you take antibiotics, except the drug-resistant ones). e. coli is not to be messed with, as it will kill you. Anyway it comes in several grades, veterinarian, cosmetic, and medical/pharmaceutical. Get medical. I avoided Chinese, but probably unnecessary since it's an old, well known production process. The kind that's in supplements is 1 or 2 %. Not what you want. The bulk med/pharma grade stuff is 99 % or higher. It is a white tasteless powder, aka Vitamin H. There is a guy named Skip (Skip's Pharmacy) in Florida who will sell you pre-compounded caps at a reasonable price. The dosage used in the French clinical trials was 300 mg/day. I am probably taking somewhat more this batch because I didn't know to use filler. Skip uses cellulose filler, so no problems with lactose. My batches last 100 days but the 30 cap machines are cheaper.

Cap machines are tricky but I can do it, so I do. You have to buy the machine and the caps. I use size 00 caps because I find them easier but even so, filler is needed. The shelf life of this powder is 2 years and that works out to less than 250g, so don't buy more than that unless you plan to share.

One place will include a milligram electronic scale with a 'Tare' function "free".

Search "bulk biotin" on Google, or "Skip's Pharmacy".

How much biotin are you taking and where do you get it? sorry for brevity, difficult to type

I could not type either. It was a sure sign of relapse as far as I was concerned.

[tzootsi]

There's a 'biotin for progressive ms' facebook page. Tons of info, hundreds of members.

[1eye]

There's a 'biotin for progressive ms' facebook page. Tons of info, hundreds of members.

Yes that's true. Joan Beal has a CCSVI page somewhere too. My instructions for biotin, above, are for this thread, and for those who, like me, are not faceliterate.

[Cece]

Looking good, 1eye!

I don't think the forum has died out, I think it's a lull before the next wave. Those of us here have pretty much all already had the treatment done.

It's a limited population who 1) has MS, 2) is willing to take the risk of an unconventional treatment and 3) can afford a treatment not always covered by insurance.

I'm ok with a lull as long as research continues and as long as there is progress toward establishing this as the standard of care. My jugulars were so badly blocked. I don't want anyone to be in that condition when it's fixable.