This Is MS Multiple Sclerosis Community: Knowledge & Support

[HappyPoet]

Found out yesterday from my PCP that the tiny, smooth, flat red dots on the top of my feet, on my ankles and spreading up my lower legs are definitely called petechiae and are a sign of CVI. So, I'm very, very glad I started Daflon which has been shown to have a statistically significant positive effect on petechiae; the study has been cited 193 times. Now I have two reasons to use Daflon: CVI and CCSVI.

I wonder how many people with CCSVI have diagnosed or undiagnosed (like me, until yesterday) CVI. Symptoms of CVI, which can be present in any combination: petechiae (some spots might turn brown and fade); swelling of feet, ankles, and/or lower legs; feeling of heavy, tired legs; restless legs; aches and pains of many kinds; varicose veins; skin ulcers; tingling; itching, and more.

Edits in red.

[PointsNorth]

Perhaps if we PwMS have one valvular issue in one area, we are more likely to have them in another?

[Jugular]

Perhaps if we PwMS have one valvular issue in one area, we are more likely to have them in another?

Even if the CVI is limited to the brain drainage veins, clinically, only the patently bad ones get angioed. In my case, my LIJV was left completely alone as it seemed to be working "fine". But does it work as well as it should? And what about all the other valves in all the other veins that do not usually get treated? This is why I think Daflon 500 mg can be a good adjunct to venoplasty in the treatment of CCSVI. The real problem valves get ballooned and the others get a pharmacological treatment.

By way of update, I'm still doing well but no big gainers. What I notice though is that my mood has improved quite a bit on it. I'm a regular chatty Kathy these days. I guess it must have been depressing having all that toxic blood not draining properly.

[Thekla]

This is all very interesting to me. I definitely do not have any petechiae on my legs---I did have some on my arms after a bout of 'walking mono' during my teens. But I did have my ccsvi treated Frankfurt 2010, Brooklyn 2011 with some benefits and definitely some blockages. I do have swollen legs/ankles/feet and heavy tired restless legs. Maybe I ought to pursue a Daflon prescription.

[Algis]

After talking to the pharmacist; she told me that Daflon wasn't sold anymore here and that the Pycnogenol I took before is the closest she can find. After thought we decided to restart Pycnogenol and try to increase the dosage... 2 capsules a day instead of 1 and let's see what will come out of that. I'll start tomorrow morning and will report of any sign.

[HappyPoet]

Packet 1 update: Nothing to report yet, but I have a feeling it will take awhile for an effect to show up regarding my petechiae. Really looking forward to reading others' updates about this.

Jugular, glad to hear about your improvement in mood. I'll keep watch to see if I notice any such changes in myself.

Thekla, sorry to hear of your leg symptoms. Please share updates with us if you do try Daflon. We'd love to hear from you. And remember, talk to your doctor, first (something I try to automatically say to everyone who might start taking Daflon).

Algis, did your pharmacist say why Daflon is no longer sold in your country? Thx.

[Algis]

@Happy Poet: I cannot for sure make it a rule or a trend But:

Here in Asia (and more precisely here in Taiwan) - being sick is a curse... Not much people have a kind eye to sick people... You're productive; healthy and make money; then you're appreciated. Since social support is pretty (very) limited; when you are sick you are a burden. If you are a burden; you lose face and many just keep sick dying; not to lose face and being a burden.

Now why is that have anything to do with Daflon? Daflon is not a first-line medicine; where one's life depend on. It is more like a "luxury med" (please forgive the wording; English is my 5th language) - That people would take for veins web, endothelial problem etc... Therefore there is no "profit" in keeping importing Daflon by the kgs, since you'll only sale few boxes... Pharma big importer "might" have some stock here or there but who am I to ask them to check for few boxes (as my Pharmacist is, powerless, btw).

Pycnogenol is on the side of "supplements" and get a tendency; which makes it profitable. Big nuance...

Do not misunderstand my say: Taiwan Doctors are the best I have encountered (Between Europe Benelux / Eastern Bloc / South-Asia) about their caring; but it is like giving the best hunter a Swiss knife; they are powerless despite their good will....

I hope this can explain a bit and hope it might help anyone understand;

Be well;

Algis

[munchkin]

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.

[Thekla]

I don't see the doctor until the end of the month, so I'm gathering my research! I have been occasionally having warm, burning toasty feet in the evening and other days they are icy-cold despite being in thick wool fleece slippers. Yesterday, they were warm. After reading these comments, it occurred to me that the answer might be the vasodilator effect of the glass of wine I had had with dinner. Today I repeated it. My feet were icy in the afternoon but after wine with dinner, they are warm. Do you think this could be an indication that I'd benefit?

[1eye]

@Algis: This stuff works for me, on my circulation in my feet and I think in my bowels. I don't think much besides hard work and another procedure will help my other problems. I seem to be dreaming again, though. Weird.

My main aim has been healing the infection on my foot. Seems to be working. I take the cheapo supplement stuff. Don't know if you can get that, but I bought Swanson's.

[Jugular]

After talking to the pharmacist; she told me that Daflon wasn't sold anymore here and that the Pycnogenol I took before is the closest she can find. After thought we decided to restart Pycnogenol and try to increase the dosage... 2 capsules a day instead of 1 and let's see what will come out of that. I'll start tomorrow morning and will report of any sign.

Your pharmacist is very smart. Pycnogenol was proven in studies to be more effective in treating CVI. But which one is more effective in treating CCSVI? I am very much looking forward to your results and am hoping they are positive.

[Jugular]

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.

Darn it anyway! I'd be curious to see if you improve after stopping, then the causal link would be easier to draw.

[HappyPoet]

Algis, thank you for your very thorough explanation. Learning how other countries' health care systems work is so interesting. I'm sorry being ill in Taiwan is looked upon as a curse; hopefully this will change. Everything you wrote is easy to understand; your English language skills are excellent, especially for a 5th language! I'm so glad you can get Pycnogenol, and I hope it helps your symptoms--please keep us updated.

munchkin, those spasms don't sound like fun, ouch! I can understand you wanting to stop--if the spasms then stop, you might well have your answer. To be certain, after the spasms hopefully stop for a couple weeks, you could try taking Daflon again and see if the spasms start again. Let's hope this was just a coincidence.

Now, off topic, munchkin--losing your improvement in walking, which was previously improved 100%, is concerning. Have you had a local follow-up ultrasound (does not need to be Zamboni protocol) to check for both clots and flow? Or a d-dimer blood test (Cece knows about this) that will detect clotting? These questions aren't pertinent if another procedure is not wanted nor possible at this time.

Thekla, I wish I knew the answer about whether or not Daflon will give you the same symptom benefit that wine is apparently giving you. I used to have the same problem with burning hot/freezing cold feet which lasted about two years, and I wish I had thought to have tried an evening glass of wine (or two). Please let us know what your doctor says, thx!

1eye, super glad Pycnogenol is helping your infected foot. Enjoy your dreams!
~~Happy, happy, joy, joy~~

Edit: sorry, Algis--seems my English language skills need work in proofreading!

[munchkin]

Hi
Jugular, I think it did help with my leg heaviness and boy, what dreams I was having. But, I just can't take the chance with the spasms.

HappyPoet, I'm glad to see that you are still here. The spasms are quite scary and they do hurt. I have had them before after the first procedure and it always seemed to end up with loss of ability. The dreams were nice to have. 1st night off the Daflon and no dreams. I kind of miss that, it also told me that it was doing something.

I'm still on blood thinners from the 2nd procedure in Aug and at this point I'm going to stay on them as long as possible and definitely until I get the results from my u/s. That could take awhile as our Canadian system isn't very quick along with some other issues.

Wine seems to help me with my cold hands and feet. Such an enjoyable way as well. So much better than a pill, I just wish wine would do things like keep veins open. That would be a trial I would willingly take part in.

[1eye]

1eye, super glad Pycnogenol is helping your infected foot. Enjoy your dreams!

Nope, just "Diosmin". Same formulation without the micronization.

Suzanne's way of knowing whether she had dreams is to tell me about them as soon as she wakes up... "But I don't CARE if Steven Harper was having a Tupperware party!" As Popeye used to say, "ach-ach-ach-ach"