CCSVI in two days

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

Re: CCSVI in two days

Postby David1949 » Tue May 22, 2012 1:59 pm

bruce123 wrote:My understanding of Betaseron may be different than yours. Betaseron is a DMD that is supposed to reduce the progression of your MS.
Bruce


I'm not a doctor but according to the manufacturer;

INDICATIONS AND USAGE
Betaseron (Interferon beta-1b) is indicated for the treatment of relapsing forms of multiple sclerosis to reduce the frequency of clinical exacerbations.
http://berlex.bayerhealthcare.com/html/ ... ron_PI.pdf
see page 3

So it reduces the number of exacerbations in relapsing remitting MS, but they make no mention of slowing the progression of the disease.

Dave
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Re: CCSVI in two days

Postby 1eye » Tue May 22, 2012 4:32 pm

Disclaimer: I'm just a patient...

There came a time after I had had fairly mild "MS" that I started to become disabled. I was told (I now think long before they would have been correct) and it eventually was true (I believe they had identified that I was beginning to visibly progress), that I had "converted" to some more progressive form of the disease. It's more gradual, but you can see where it's headed.

A profound change came in the way people related to me. After a while they give up on you, inevitably before you have given up on yourself. Yes, I can't walk much, or work, or drive, or play the guitar. But I have not become a different person. It's just that if you are unable to participate in most normal activities, or need help with ordinary tasks, people can't connect you very easily into their lives anymore.

I think nothing that has been found so far will halt progression, prevent "conversion" to progressive disease, or reverse disability. That has been claimed for various treatments, but I think CCSVI and diet are at least as, or more likely, to do this than, say, autologous stem cells, or a pulse of chemo, or Tysabri, or Gilenya.

There is no guarantee that any of them will. There are statistics, but have you met one? I haven't. There are always deviations from the mean, in everyone. You should decide for yourself whether to stay the conventional course or not, but I think you have at least as good a chance with diet and treatment of veins. That is only my opinion, but I think most agree that the sooner you treat "MS", the better.

I'll leave it for others to tell you about people hurrying you up by pulling on your walker, and other pleasantries. You may get used to being polite about a lot of things, and saying thank you much more than please. Keep saying please. It comes with the territory.

In the short run, don't go off DMDs, as you may not have the option of starting them again.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: CCSVI in two days

Postby Cece » Tue May 22, 2012 5:26 pm

We haven't given up on you, 1eye.
Eloquently said, all of this.
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Re: CCSVI in two days

Postby FLJhawk » Wed May 30, 2012 9:02 am

OK, here I am at 12 weeks post CCSVI.

Right now, most of the numbness I had last week is gone, showing it was due to the Solumedrol and its aftereffects. Thank goodness there will be no more Solumedrol, at least for a while! But, Monday and Tuesday were rather down days. I just stayed home Monday, feeling tired and my whole body being uncomfortable and yesterday, at work, my whole body felt kind of tensed up and I had to be careful when walking to make sure I didn't trip or stumble. Brain fog might be a little more, but it might be due to being tired. It is always difficult for me to fall asleep, even with Ambien.

But, I did go on a two day hiatus from LDN, not taking any Saturday or Sunday. My neuro had warned me about Naltrexone being addictive, which I dismissed, but maybe he is right. The second day after I stopped taking it I felt bad, and the second day after I started it again I feel better. I am taking right around 3.5 mg per night now. I read somewhere that one should stop LDN for a day every few weeks, which is why I stopped. Regardless, I will keep to a regular schedule for the next 3 weeks now, thus no LDN stoppages or Solumedrol to interfere with my new-normal state of being. That might give me a clearer picture of things.

I still don't know how effective CCSVI has been for me. I remember one time, the week before treatment, I was with my daughters and my legs were hurting and I had to sit down for a long while when we visited my old university. I had wanted to walk the campus, but just couldn't. I have not reached that low point yet again, but do not know if that is because of CCSVI or what.

To review, I am on Betaserone (4 1/2months thus far) and LDN and my MS symptoms are still pretty mild. Yes, I know some say the effects of Beta and LDN cancel each other out a bit, but this is what I am choosing to do for now. I am actually a bit skeptical that they really do cancel each other out and if anyone wants to argue the point, I welcome it but please present some studies that prove the point. Otherwise, just accept me as an experiment in process!

So, I continue to hang in there and don't seem to be progressing much, though there are ups and downs. As long as the downs don't exceed the ups, I will be happy!
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Re: CCSVI in two days

Postby FLJhawk » Wed Jun 06, 2012 8:34 am

Now at 13 weeks post op.

Things are going better overall this week. I have not been experiencing as much numbness and tingly sensations as I previously did. I am about to start month 5 of Betaserone and I don't really need to per-medicate to avoid the flu-like symptoms anymore, but I do get leg discomfort and some fatigue the following day, which clears up the next evening. Cog fog is still there but not too bad and I don't think it is impacting my life very much. It sometimes feels like I just work up. LDN dose is right at 4 mg. There is still fatigue associated with the leg discomfort. The legs pain also seems to correlate with lots of walking. If I do a lot of high speed walking at work, the legs will start hurting later.

Went to my PCP today and am getting some blood work done to check for liver function, D3, Zn and Mg. I showed her a list of all the supplements I was taking and she suggested I limit my Vit E to 400 IU max. She thought my D3 intake was high, but I said how MS patients tend to be low and I have been trying to get it up and I want the test to see where I am at. She agreed. Nice to have a doc who will pretty much run the tests you want, but then what I am asking for is quite reasonable.

To relate this back to CCSVI, I have no complaints about the procedure but as I have always said, there is just no way to know how effective it has actually been. I need to get an ultrasound as next week will be the 3-month anniversary. My guess is that my veins have stayed open, but who knows? I do know that I am happy with where I am at this point - MS symptoms still mild and though it slows me down at times, it hasn't been stopping me from doing anything I really need to do.
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Re: CCSVI in two days

Postby tiltawhirl » Wed Jun 06, 2012 8:24 pm

Again FLJ, thanks for keeping us updated. All the best on continued healing and more positive changes for you. :)

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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Re: CCSVI in two days

Postby FLJhawk » Wed Jun 13, 2012 8:25 am

14 weeks now and my 3-month anniversary! Time is marching by.

Not much to report. My condition is still variable from day to day. I still have periods where my legs hurt, which seems to be related to how much I walk. If I walk a lot, especially at higher speeds (which I tend to do), then my legs seems to hurt more, but it is never debilitating and subsides after a few hours. There is still numbness in my hands. The degree of numbness is variable, from being nearly unnoticeable to where it is somewhat bothersome. Fortunately, it has not significantly impacted the use of my hands. Cog fog has not been a factor very much. Finally, I guess I have also noticed some slight difficulty standing up. Not sure how to describe it - numbness or an unsteadiness that sometimes makes me have to concentrate on standing and remaining balanced.

I remain on the Beta, LDN and all the supplements (D3, Zn, Mg, Malic Acid, etc).

Overall, I remain pleased with where I am at, compared to where I could be anyway. Some of this success may indeed be do to CCSVI. I think a goal I had set last March was to be able to delay further treatment to await new treatment options (i.e. stem cell treatment, BG-12, etc). I seem to be meeting that goal, as I don't feel any worse today, overall, than I did 3 months ago today when I was "liberated" and, in fact, I may be slightly better in some things.

So, at my 3-month anniversary, I am thinking the outcome has been positive. Not by a whole lot, perhaps, but a little.
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Re: CCSVI in two days

Postby FLJhawk » Wed Jun 20, 2012 8:32 am

15 weeks now.

Not a whole lot of change from last week. I have been getting some headaches which last most of the day, maybe once or twice a week (I didn't report this last week). There is still the low level numbness in my hands. My legs have not really been hurting, but there is more of a lower level numbness. I can still walk fine, but things just aren't right. I have to admit that I have been quite lazy. I go to work, sit at my desk most of the day, then go home and sit around watching TV with my daughter, who is home from college for the summer. I really need to get a treadmill or something! I am taking my two daughters to Comic Con next month and there is a ton of walking there. Man, in the last few years we have gone I was the trail blazer there, racing ahead of the crowds, pushing through, waiting in lines, etc. Not this year. :(

And, there might be a slight increase in brain fog. Not much, but perhaps a little.

My Beta shots seem to be leaving more reddish patches than before, so I may mention that to my neuro when I see him next. I am really looking forward to BG12 coming out!

I know I should be getting an ultrasound to check on how I am doing. It is just that I don't want to repeat a CCSVI procedure at this point in time, so it seems a bit pointless.
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Re: CCSVI in two days

Postby Cece » Wed Jun 20, 2012 10:03 am

The advantage of a ccsvi ultrasound even when you don't want to repeat a procedure is to check for clotting. Clotting can destroy a jugular but if caught early, it can be treated and manually removed. The later a clot is caught, the less the odds of correcting it.

I want a treadmill too. I was stalking one on walmart.com that was a spring clearance but it never got low enough and it's gone now, alas.

Does the summer heat affect you? That's something I've taken into consideration as I monitor my day-to-day health.
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Re: CCSVI in two days

Postby FLJhawk » Thu Jun 21, 2012 4:48 pm

Ceci, thanks, you are right about the reason for an ultrasound. I failed to consider clotting. I guess since I haven't felt like I have gotten worse that I forgot about it. I do know the doctor wanted me to have scans every 3 months, so I suppose I should find someone locally to do it so I don't have to drive 3 hours to Clearwater.

The heat doesn't seem to bother me abnormally. Overall, I am pretty lucky with my symptoms.
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Re: CCSVI in two days

Postby Cece » Thu Jun 21, 2012 9:48 pm

I usually recommend following the doctor's advice, unless we are talking about a neurologist... :lol:
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Re: CCSVI in two days

Postby FLJhawk » Wed Jun 27, 2012 10:54 am

16 weeks now. Overall, things are a bit better. Numbness is the hands is less, except for when I use my computer too much. Leg heaviness and some pain is still there, but varies in intensity form barely being noticeable to being simply uncomfortable. I think if I sit at my desk too much the pain builds up but if I walk or stand too much I get heaviness! Cog fog is not bad and I have no real balancing issues.

The real test will be in two weeks when I take my daughters to Comic Con in San Diego! In years past, I was the the trail blazer, winding in and out of the crowds, getting up in the wee hours to wait in lines and walking miles each day. That won't be happening this year, but I hope to at least survive!

I do seem to be reacting more to the Betaserone, though. Injections used to be nearly painless, but there is a bit of discomfort now during and shortly after the injections. A big part of me just wants to discontinue the drug as it appears that the CSSVI/LDN/supplements are helping. But, I have now been on Beta 5 months and my understanding is that the drug should just now be starting to help, but helping only in possibly slowly down progression, not in actually making me feel better. The side effects, other than the brief discomfort, aren't too bad, so I suppose I will keep doing what I have been doing.

But, still happy I had CCSVI, as it may be helping.
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Re: CCSVI in two days

Postby FLJhawk » Tue Jul 03, 2012 8:58 am

17 weeks now. How long will I keep reporting???

Overall, I am feeling pretty good, and am a bit surprised by it. Side effects form the Beta are reduced. Leg heaviness and discomfort is less. I worked in the heat all last weekend and it didn't bother me much. As I said last week, Comic Con next week, with miles of walking, will be real test. But, the numbness in my hands is very minor and there is very little cog fog, nor have I had headaches.

I am sure that I am getting used to some of the symptoms and what may have really bothered me a year ago, today they don't as they are my "new normal". But, there is one new symptoms and that is some twitching in a small muscle group in my upper right arm. It will twitch rapidly for a few seconds, then may stop for a few seconds to many seconds to maybe an hour, then start all over. It just started over the weekend. I don't know if it is MS-related or something else. It is a little better today. It doesn't affect the use of my arm or hands, but it is a bit distressing and makes you fear the whole arm with start twitching. My thoughts at this instant is that this will resolve, so I won't worry about it too much.

Anyway, I am pretty happy with where I am out at this point. The timing of all of this improvement is exactly what I would have expected from CCSVI (as well as LDN and the supplements). Can't say which, if any, is responsible but I said at the beginning I was going to try a number of things and not worry about which of them might be responsible for any improvements.

Ya all have a great July 4th if you are in the US, and for the rest, be glad of the US and celebrate freedom with us!
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Re: CCSVI in two days

Postby FLJhawk » Tue Jul 24, 2012 1:31 pm

20 weeks now since CCSVI!

I have returned from Comic Con, an event I have been attending with my kids for the past 5 or 6 years, and which I was fearing would severely tax me now that MS has taken taken hold of me. I can add that it was a year ago this month that I was really starting to notice a problem in my balance and coordination that led me to fear at the conclusion of last year's Comic Con that the event might be my last.

But, all was well and I did quite good. Most of my issues were more from me being a bit out of shape. I got sore and tight at times, but given I have not been as physically active as I had been a year ago, it was to be expected. So, while I didn't do quite as much this year as last year, I did very well overall and my MS was not a limiting factor at all. And, yes, Comic Con was great, with way too many people, but it was fun and my two daughters had a blast.

Otherwise, there has not been a lot of change over the last three weeks. There is the occasional overall numby feeling which isn't too bad, and some occasional lower leg pains and tightness, but not much cog fog. The twitching that I mentioned last time has only occurred briefly since. The only thing I am noticing that might be a little worse is some slight slurring of words at times. Much of the hand numbness I have mentioned before hasn't been very significant. But, I have been away from work for two weeks and not using the key board nearly as much, so that might be the reason.

But, the same old questions about what is responsible for my current state - CCSVI, LDN, supplements, diet, my own susceptibility to MS or even to Betaserone - remain unanswered. I did read of the report that showed Beta does not prolong the time to disability, and I will speak with my neuro/friend about possibly stopping it and waiting for BG12. I am getting a lot of reddish spots and if it isn't really going to help me, why continue with it?

Bottom line is that I remain positive on CCSVI.
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Re: CCSVI in two days

Postby FLJhawk » Wed Aug 22, 2012 3:18 pm

It has been a while since my last update, and this will be the 5 month report.

I am doing quite well! Brain fog is pretty much gone. I have essentially no fatigue or muscle pains, very little dizziness, etc. There is some very mild numbness in the hands and wrists sometimes, but is generally not noticeable unless I stop and think about it. Overall, I am tickled pink with my status.

I did stop Betaserone last week. After reading another report showing it doesn't impact the time to disability, I decided to give it up. I pay $100/month and my insurance company is paying $3,000/month for it, and that is a lot of money to pay for something that won't delay my time to a wheelchair.

I continue the malic acid and LDN, and the other supplements, but I have been slipping on the diet. That happens when you have kids home from college! I am getting back on a more healthy diet, but I can't resist a cheap meal at Taco Bell!

As I always say, I have no idea what I am doing (or not doing), or what have had done (CCSVI), that is causing my improvement. Maybe I am in a remissive stage and I could be slapped down any day down. Whatever, I am so thankful for where I am. Just 8 or 9 months ago I was so scared that I would be highly disabled at this point. Even if I do get a major exacerbation soon, this added time to do some things I wondered if I would ever get to do is wonderful.
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