This Is MS Multiple Sclerosis Knowledge & Support Community

To answer my own survey:

Date started: September 15, 2011

Dosage: 3 pills per day, two in am, one in evening

Description of MS: Diagnosed many years ago. Mostly below neck symptoms with mainly right sided effect with bad foot drop, weak arm and hand, paraproximal neuropathic pain in upper neck/back of head.

CCSVI diagnosis: MRV - severely occluded RIJV. Venogram - malfunctioning valve RIJV and Azygous. Marked reflux in Azygous.

CCSVI treatment (type, date(s), clinic(s): December 20, 2010, Dr. Arata, Synergy, valve angioplasty.

CCSVI treatment results: Marked improvement in core strength, knee and shoulder, grip strength doubled in right hand, Babinski's reflex positive for plus 10 years disappeared.

Daflon 500mg results: Marked augmentation in CCSVI treatment results with increased upper body core, and leg strength, increased knee stability. Walking speed increase. More energy and improved mood.

Jugular, you don't have CVI too? These are all benefits in your CCSVI and/or MS?
I am curious to hear how everyone does on the drug, so I hope this thread continues.

Cece wrote:

HappyPoet wrote:UCC is controlling two symptoms and CCSVI controlled three symptoms, but I've restenosed at the six-month mark and anticipate losing my IJVs due to occlusion.

HP, do you know that both IJVs restenosed? Was this by ultrasound? Through ultrasound, the doctor should be able to tell what the restenosis is, namely if intimal hyperplasia or clotting are seen. If you are anticipating occlusion, did the doctor tell you that either of these was present? It is very possible to restenose without the loss of a vein being imminent. Tell me more, I am worried.

Cece, you're priceless! You're so sweet and caring. Your questions really mean a lot, but...

Last week, I received a denial of appeal letter from Medicare (TEN pages--talk about a bureaucratic waste of money!!) for my June US that I'm required to pay for. I haven't had the six-month US test because I don't know what good an US will do other than cost me another $500.

Does it really matter right now if my restenosis is a complete occlusion or just a partial blockage of either intimal hyperplasia or clotting given that I have a complete loss of improvements? I think both IJVs have restenosed because my tinnitus is back in both ears, but this is just a guess.

I do understand that knowing what the restenosis is caused by--clotting, intimal hyperplasia, valvular tissue popping out from the vein wall, recoil of the annulus, or scar tissue--will be important when/if I decide to have another procedure, but in the meantime, do I really need to know?

To me, the improvements that venoplasty gave me aren't worth all the costs and risks, both known and unknown, of having another procedure at this time, or at least I've convinced myself of this. At any rate, I'm going to wait until there are more published studies, there are more IRs experienced in getting through occlusions and blockages, and there are more options regarding valve and vein replacement.

I'm one of the luckier unlucky patients in that I have extra-large collaterals and my IJV blockages were 99% and 95% which means that when my IJVs become occluded, if they aren't already, at least I won't get worse than I was before venoplasty. I really feel sorry for the patients who had venoplasty for lesser blockages than mine because my understanding is that when/if their IJVs occlude or become blocked more than their original blockages, the patients will end up worse than they were before venoplasty.

Thanks again for asking, Cece. Hopefully, you know how important you are to all of us.

David1949 wrote: Don't worry I won't give up on Daflon after just 3 days.
I have a 30 day supply. Unless there are problems I'll use those up before I come to any conclusions.

BTW maybe all of the issues you listed cause symptoms that doctors diagnose as MS. But they are really separate conditions that need different treatments. Maybe we are suffering different diseases that all produce symptoms classified as MS. Maybe that's why Liberation works for some but not others. Just a thought.

Many of us agree with you!

Jugular, thanks for doing this! Since some of us are using "diosmin," which is Daflon's major ingredient (90%), do you want to include it in the Daflon 500 item?

Date started: 10/5/11 (today!)

Dosage: 2 pills per day with food; one at noon, one in evening.

Description of MS: RRMS transitioning to SPMS. Still ambulatory (but can't walk far).

CCSVI diagnosis: US - Zamboni criteria = 3 out of 5; MRV - missing L-TS.

CCSVI treatment (type, date(s), clinic(s)): Venoplasty in August, 2010 with Dr. Mehta; Valvuloplasty in March, 2011 with DrS.

CCSVI treatment results: 100% improvement in balance and tinnitus; could see bright colors.

CCSVI restenosis if applicable: October, 2011 - Complete loss of all three improvements.

Daflon 500mg results: Unknown as today is Day One; will edit if/when I notice any changes.

HappyPoet,
You hit the nail on the head. But in a much more articulate manner. Thank you for saying it so well. I do agree with both you and David1949. It's wonderful that some are having great results.

Ruthless67,
Thanks for sharing about your hands and feet. I hope that the Diosmin will help, it just might take a little longer.

For anyone out there who has really reduced blood flow through their jugulars are you concerned about the vasoconstriction effect?

HappyPoet wrote:Does it really matter right now if my restenosis is a complete occlusion or just a partial blockage of either intimal hyperplasia or clotting given that I have a complete loss of improvements? I think both IJVs have restenosed because my tinnitus is back in both ears, but this is just a guess.

Clotting and scarring typically occur early after the procedure. If these were not present at your 3-month ultrasound, I think they are not likely to happen. Those are the two that are most worrisome, too, since they can close off the possibility of future procedures being successful.

It matters to those of us who care about you but it is reasonable enough to not throw money at ultrasounds if there is no action to be taken regardless of what the ultrasounds show.

(If you or your doctor had any reason to suspect clotting, remember that clotting can be treated conservatively through anticoagulants, to prevent a clot from getting worse and give the vein time to recanalize. A d-dimer test is cheaper than an ultrasound and might show if active clotting is underway somewhere in the body.)

Cece wrote:Jugular, you don't have CVI too? These are all benefits in your CCSVI and/or MS?
I am curious to hear how everyone does on the drug, so I hope this thread continues.

Heck no on the CVI Cece, I have lovely leg veins. These are all improvements to my MS, which has often startled me, since I have trouble understanding how improving my CCSVI condition has had such a marked effect on my neurological function. My impairment is definitely from damaged nerves though - I have the MRI scars to prove it.

HappyPoet wrote:Jugular, thanks for doing this! Since some of us are using "diosmin," which is Daflon's major ingredient (90%), do you want to include it in the Daflon 500 item?

Date started: 10/5/11 (today!)

Dosage: 2 pills per day with food; one at noon, one in evening.

Description of MS: RRMS transitioning to SPMS. Still ambulatory (but can't walk far).

CCSVI diagnosis: US - Zamboni criteria = 3 out of 5; MRV - missing L-TS.

CCSVI treatment (type, date(s), clinic(s)): Venoplasty in August, 2010 with Dr. Mehta; Valvuloplasty in March, 2011 with DrS.

CCSVI treatment results: 100% improvement in balance and tinnitus; could see bright colors.

CCSVI restenosis if applicable: October, 2011 - Complete loss of all three improvements.

Daflon 500mg results: Unknown as today is Day One; will edit if/when I notice any changes.

Thanks HP. That sucks to hear of your restenosis. Hopefully, diosmin can help. I would like to hear from folks who are not just trying Daflon, but also similar CVI drugs such as Pycnogenol.

munchkin wrote:HappyPoet,
You hit the nail on the head. But in a much more articulate manner. Thank you for saying it so well. I do agree with both you and David1949. It's wonderful that some are having great results.

Ruthless67,
Thanks for sharing about your hands and feet. I hope that the Diosmin will help, it just might take a little longer.

For anyone out there who has really reduced blood flow through their jugulars are you concerned about the vasoconstriction effect?

Subject to the warning at the beginning of this thread, I am convinced that the vasoconstriction effect is primarily on the microcirculation - where all the MS damage is occurring - and not on the main thoroughfares such as the jugulars.

Cece wrote:

HappyPoet wrote:Does it really matter right now if my restenosis is a complete occlusion or just a partial blockage of either intimal hyperplasia or clotting given that I have a complete loss of improvements? I think both IJVs have restenosed because my tinnitus is back in both ears, but this is just a guess.

Clotting and scarring typically occur early after the procedure. If these were not present at your 3-month ultrasound, I think they are not likely to happen. Those are the two that are most worrisome, too, since they can close off the possibility of future procedures being successful.

It matters to those of us who care about you but it is reasonable enough to not throw money at ultrasounds if there is no action to be taken regardless of what the ultrasounds show.

(If you or your doctor had any reason to suspect clotting, remember that clotting can be treated conservatively through anticoagulants, to prevent a clot from getting worse and give the vein time to recanalize. A d-dimer test is cheaper than an ultrasound and might show if active clotting is underway somewhere in the body.)

I agree with Cece, it's best to get this checked out to be sure that if you have restenosed (which hopefully you haven't) it's due to recoil and not something more serious.

Date started:Oct 4th
Dosage:2 pills a day with food
Description of MS:RRMS transitioned to SPMS in 2009, walking with cane and an arm or two.
CCSVI diagnosis:u/s both jugulars between 50% to 75% stenosis
CCSVI treatment (type, date(s), clinic(s): 1st procedure Venoplasty of both IJV's, March/11 Dr.Cumming;
2nd procedure Venoplasty of RIJV, Azygous, and attempt at LIJV, August/11 Dr.Sclafani
CCSVI treatment results:1st treatment 100% improvement in walking, sensation in fingers, cold sensitivity, fatigue, bladder control, ability to sleep through the night, mood, ability to use hands, ataxia, and foot drop. 2nd treatment: Was starting to have improved walking but within 1 week that started to disappear, only lasting improvement is a sense of control over my internal muscles.
Daflon 500mg results:
Oct 11 - One week results and I will stop taking Daflon. I have had some spasms in the area of my stenosis in my jugular and am having more balance issues and weakness in my hands. This might just be a coincidence.

Thank you Jugular, I was of that thought myself. Just needed some reassurance.
My pharmacist said that you can't go wrong with this supplement.

Jugular wrote:

munchkin wrote:HappyPoet,
You hit the nail on the head. But in a much more articulate manner. Thank you for saying it so well. I do agree with both you and David1949. It's wonderful that some are having great results.

Ruthless67,
Thanks for sharing about your hands and feet. I hope that the Diosmin will help, it just might take a little longer.

For anyone out there who has really reduced blood flow through their jugulars are you concerned about the vasoconstriction effect?

Subject to the warning at the beginning of this thread, I am convinced that the vasoconstriction effect is primarily on the microcirculation - where all the MS damage is occurring - and not on the main thoroughfares such as the jugulars.

What I seem to be finding, with my ankle infection (which is slow to heal, July to October so far) is that Diosmin speeds it up, and when I don't take it, it slows it down. Plus my regularity is better even when I take codeine pain-killers (it wasn't, before). That doesn't mean leukocytes can cross the BBB, but it sure helps me. If I die of PML, I'll let you know, but I don't expect it. I do think macro vessels, with valves, are affected, as that's what the little Daflon animation shows. It just can't undo malformations (or clots).

1eye, you should look into Hyperbaric Oxygen for you ankle to heal. It may be covered by insurance.
I know the oxygen chambers are used for healing burns and differ types of sores.(also lots of face lifts)
Regards to your sweet Mrs.!

Kiki

Just received My Daflon minutes ago. I just realized that I was given it after my treatment in Bulgaria. I did not know it was Daflon as it was only written in Bulgarian. I did ask the doctors what it was and all they said it was something for the veins, they did not elaborate more than that. I was not religious in taking it. So here goes. Keep your fingers crossed.

fingers crossed for you dania.