This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello Judi from North Carolina here. I've been in a significant flare-up since Thanksgiving (which is when I found out about CCSVI). Things got severe enough that Sat, Sun, Mon, Tues of this week I've was bedridden (leaden legs,severe vertigo) . I was able to get a friend to take me to an acupuncturist who I told about CCSVI and she did a treatment on me for my neck veins and barometric pressure (my flares come when the cloud cover is dense). Today I am clear headed and walking pretty well.

I am going to continue to see this acupuncturist regularly for work on my veins while I wait for the surgical procedure to get a go.
Also horsechesnut cream is good for your veins, and you can find it at your local health food store.

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.

Judi - acupuncture is brilliant...

Something else that I have received great benefit from (but not full relief), is Cranio-sacral massage. My wife and I used no birth control for over 10 years, with no pitter-patter. When she started seeing the Cranio-sacral therapist, the C-S gal "untwisted" my wife's uterus. Just a few months later, the pitter-patter was on the way... - and we had resigned ourselves to no kiddies...

I e-mailed the C-S therapist after learning of CCSVI - thinking that she might do something for me in the interim, but have not heard back, and I've been too busy here to try again... I believe that it is worth trying though.

_________________
My name is not really Johnson. MSed up since 1993

Not Johnson--My acupuncturist mentioned cranio-sacral, particularly for my issues with barometric pressure. (My ms flares when a low system comes through). I think I've visited a C-S practitioner once in my lifetime, and may try again. I don't know how it is in Canada, but here in the states paying for alternative medicine out-of-pocket can get pretty rough. Luckily, my accupunturist has a Thurday clinic where I can get treaments for $35 a pop.
They'll cover my neuro. but I won't go see him because it's useless and I think it's a racket (but I don't think it's an intentional racket), but they won't cover acupuncture even if it helps. My energy for fighting battles is limited, however, so we just do the best we can.

But how are you? How's your health? Are you out of bed? How's your son, and Judy? My six-year-old has been with his dad all week because of my health. They came over yesterday to show me the mistletoe they picked, and are going to sell at the town Christmas Parade today. That's a project that I invented and usually do with my son, but because I've been laid up Dad agreed to do it. My son will be over here tomorrow which will be great. I'm doing better now, slowly mobile and on balance. Phew...I'm always relieved when symptoms remit .

Are we allowed to add personal notes on these forums, or is that frowned upon?
I think I'm addicted to thisisms.

Judi

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.

Oh wow...I'm already a family member. That didn't take long!!

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.

Hi judipom,

I KNOW I'm addicted, lol!

Lora

Judi - I am out of bed, just a few days in. It was some kind of stomach bug, which was not too bad in and of itself, but the bed "rest" seems to have exacerbated my exacerbation... That sounds like the jugs, wha?

I'm crawling back though, and thanks for asking. Maybe PM is the way to deal with the "personal"? I'd hate to be more tedious than I am already. Laugh.

_________________
My name is not really Johnson. MSed up since 1993

Hi judi and johnson

Have any of you tried Inclined Bed Therapy (IBT) ? My bed has been inclined for about a month - and it is really making a huge difference for me! The dizziness and headaches in the mornings have gone, and I have had no new MS stuff since I started.

I was diagnosed with CCSVI at dr Simka's a week ago, and when you think of it - IBT really makes sense in the CCSVI theory. I have a blocked jugular, and so if I am sleeping inclined - the azygous veines are helping
me draining the blood from my brain.

ALL of my MS-badness has presented itself in the morning - when waking up (when I was sleeping on a flat bed that is). I am convinced this is due to my blocked veine making it difficult for the blood to return from my brain.

You can read all about IBT here: http://www.thisisms.com/ftopict-8535-inclined.html+bed+therapy

christian

_________________
RRMS Dx'd 2009

Thanks IbRiz.

I have been meaning to incline my bed since I first read about it. I have the lumber in my garage, but not the gumption to do it. A friend is visiting tomorrow, so maybe I will enlist his help.

I have been noticing since I read about it, how flat I am lying in bed, and the congestion in my neck, and that it takes me hours to "be me" (sort of) in the mornings, and I am almost in tears of frustration (that is odd for a stalwart, 48 year-old male, what?) when I go to bed.

Luckily for me, my wife is all for it. (any chance that she will stop snoring? Laugh)

_________________
My name is not really Johnson. MSed up since 1993

Judi - that is odd. I noticed too, since learning about CCSVI, that I have felt worse than usual. I can laugh, when things ain't funny, and all, but I have a sense that I've slipped since learning that the end of this danged nightmare may well be nigh.

I always thought that my quirky protocols have helped, and that my unceasing optimism did likewise, but the last 6 months or so, I have started to realize that it is looking like a long, slow loss of function, and have begun to resign myself to that reality. That took me 16 years.

Kubler-Ross had the 5 stages of grief down, but I realized that she did not realize the one that comes before acceptance, and that is acknowledgment. For me, the denial lasted about a week. The anger lasted about 1 month. Bargaining took about 2 minutes. Depression probably started soon after, but I accomplished so many of the things I had always wanted to do, after diagnosis, that it probably took about 15 years to get really bummed out. Then came the stage that Kubler-Ross never realized - acknowledgment. Oh, you didn't know? Yes, I have had MS since 19xx. Oh, yes, it started out with me going blind overnight., Oh yes, it was... fricking terrifying. No. I'm actually not feeling so good right now. No, it's not you, but I just can't think right now, and need to be left alone right now. Oddly, since learning of CCSVI (by watching the W5 piece, and reading some here), my wife and a few friends finally understand. I feel that I can accept that I have MS, and actually have it. That's why I am a recluse. That is why I am poor. That is why I am 30 pounds underweight. That is why I never come to your parties, and on it goes.

It feels good to accept, knowing that it will soon be over.

/babble

sorry if I am way OT.

_________________
My name is not really Johnson. MSed up since 1993

Christian--I put my bed on an incline 2 days ago (well not actually me, but a handy friend). My relapse had begun to remit at the same time and I had an appointment with a acupuncturist who treated my neck veins--so I can't say for sure what the benefits have been, but definitely I didn't have the crazy restless leg stuff for two nights and I can tell my circulation is better, warm hands, warm head, warm feet. So I will continue sleeping inclined. I don't have to worry about my husband---we separated this summer--he liked to remind me how he did everything and all I did was sleep. (I guess my 6 year old raised himself!!) Who needs it?? Is Dr. Simka going to do surgery on your blocked veins? I may end up in Poland if CCSVI beomes impossible here in the states. I'm so glad you were able to get diagnosed.

Judi

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.

Judi - good to hear IBT is working for you. I am also feeling better - primarily I can now walk without problems when getting out of bed - before I had to grab on to the wall the first few meters. I'm sorry to hear about your husband....although he doesn't sound so nice.....

With regards to my CSCVI - hmm - I am currently thinking about what to do - it really is not easy. The stenting-business is of course the best - and proven to work, but the concerns about the stent-lifetime is really making me nervous. What happens if the stent breaks? Not really easy to repair it, or replace it.... Ballooning works about 50% of the times - but as cureious says - 50% is better than 0% !! So I think I will try to find someone who will balloon me - preferably here in Denmark.

Johnson: I think you will be pleased with inclining your bed - a lot of people have done so.
Good thing your wífe is okay with it (so was my wife - except she did complain about sliding down a bit). And yes - snoring could be eliminated - at least so I've read (reported by IBT 'users' to Andrew Fletcher - the father of IBT).

christian

_________________
RRMS Dx'd 2009

Christian--I wondered about the liability of having stents in the neck. I would be very cautious as well. I wonder why new veins can't be grown to replace the old ones--I know they grow skin to replace it on burn victims. Good luck with these tough decisions.

I see my GP today to see if she'll get me tested for venous stenosis

Judi

That is why I am poor. That is why I am 30 pounds underweight. That is why I never come to your parties, and on it goes[quote]

Johnson--I hear you on that. I would say it's taken me as long (I'm at 13 years). Especially since I've had years when I didn't have significant flares (pregnancy and breast feeding were really good for my health)but battled the fatigue big time. My bugger has been that I've believed that it was something I was or was not doing that gave me MS and if I could figure that out and change it I would be healed. It's very sobering to face "naked reality" but also a great tool for awakening, as the buddhist would say.

Off to order some Star Wars Legos for Old St. Nick. Cheers, Judi

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.

Judipom...I am so surprised to hear you say that you're worse when the cloud cover is dense...I am too...I thought it might be related to the barometric pressure and then when I learned of CCSVI, it seemed to fit even more...and I'm originally from Michigan and occassionally like an overcast day, but for the last few years, they make me feel terrible...hopefully, this is now a teporary situation...

How do you find someone who does CS?


Lisa (aka, CNClear)

Lisa--I just looked in my yellow pages under massage therapy and found a couple of craniosacral therapist. Type in craniosacral therapist in Atlanta and see what pops up. I'm just back from my GP, she won't refer me to get tests done for CCSVIbut she did give me a couple of tips. I see my acupuncturist again tomorrow. She'll give me a treatment for my veins and the barometric pressure. I'm interested to see how I feel after that.

Christmas shopping done--thanks to the internet.

Cheers, Judi