This Is MS Multiple Sclerosis Community: Knowledge & Support

If you haven't checked out my paper on endothelial healing, please do so...just click on the blue highlighted words at the bottom of my signature. It will take you to a hosting site where you can download my paper. It explains how I came to see my husband's MS as vascular, and the program he is on.

When dignan posted Zamboni's study on CCVI, the lights clicked on. I had been corresponding with a vascular doc at a university regarding my program for MS...and I sent him Zamboni's study. He e-mailed me and suggested raising the head of our bed, to avoid extra cranial pressure, in case my husband had jugular stenoses. My husband will be scanned by him for venous insufficiency in mid-March.


Let us meet with him in person next month, and I'll broach the subject, if that's OK?



I had seen Ken's webpage. He does credit your work and posts links. This is a hard thing to copyright, or claim ownership for. It is in the zeitgeist right now...as we learn more about the endothelium and nitric oxide's function...doctors are connecting the dots between vascular health and disease. And proper circulation is part of the equation. If it's any consolation, the internet is providing more answers and better health for people worldwide...even if it is anonymously!
AC...the Anonymous Cheerleader !

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Anonymous sounds much better than what you called it when you first signed on the board!!!.........................

After I post this, I'm going downstairs to get my T-Bevel and am going to raise my 'bed head' five degrees. I mean it's not like it's going to do any damage. I really hope for this to work. Could it really be so benign as tilting the bed?

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

It really is great that people on the forum want to test IBT, and I very much appreciate your help.

However, let's not miss an opportunity to study what else is happening to people trying Inclined Bed Therapy.

It’s best to begin by writing down everything you can about your current medical situation, where you can feel sensation and where you can’t, eyesight is a very important measurement and any prescriptions can be very useful., where you lived when first diagnosed, was it humid, dry, low or high altitude? Did your job involve high / low humidity environment?
Frequency of spasm, energy levels, lethargy, length of time in bed, sleep quality, nail and hair quality, frequency of bathroom visits during the night, mobility, neuropathic pain, arthritic pain, other pain, pain laying down, pain standing, balance on standing, varicose veins, haemorrhoids, swollen veins on hands and legs not varicose.




Hi Andrew,

I just received the most incredible e-mail from a lady about her raised-bed experience. Enjoy.

Betty

Betty

I was diagnosed with our favorite little disease (MS) about 3 years ago. At
the time I began to read everything I could about it. I happened to find
your posting to (something?) about sleeping inclined with info about
e-mailing Andrew Fletcher. I did that immediately. I had immediate success
with the bed and had set-backs when I did have to sleep flat. I've been
inclined ever since (never to go back to flat) .

I just wanted you to know that your testimony about how something so simple
could be SO useful was a God-send for me! After 3 years I just had another
MRI and there were no "white" lessions to be seen! Andrew DID say that this
may be an eventual cure for MS. I didn't have MS too severely when I got the
diagnosis and my doctor is mystified how/why I'm better? People with MS
don't get better! (yes, I'm afraid I may have)

Anyway, thank you for making your story available to people over the
internet! Without your posting, I still would be struggling along and
probably on an ABC drug of some kind (which I'm not and never was). THANK
YOU!!

Terri

Lew...
I'm still the aging (but also anonymous) cheerleader. Hope the tilted bed helps you...but I remain convinced it's only one piece of the puzzle. How's life without Little Debbies?? You sticking to the diet?
Happy Valentines!
xox,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Yes I am. I've been eating a three course meal every night with a grain like brown rice or basmati, a protein like fish or chicken, and then steamed veg. or berries. However, I have decided not to let best get in the way of better. By that I mean we went out with some friends to a tavern last night and they have great pizza. Well I will still do stuff like that, but not all the time. And I've cut out the junk food I used to chow on in the evenings (like my usual 3 or 4 Little Debbies!). No more dairy, no more ice cream (my other major junk food). I've cut out cold cuts like salami and proscuitto and the real fatty ones, but still eat turkey and chicken breast from the deli. So it's not all the way that's for sure, but it is so much more healthy and not eating all the junk food I think will have a big impact. I really had no idea how many bags of fritos and stuff like that I used to go through until I cut it out. I'll tell you, if my metabolism wasn't so damn high I'm convinced I'd be huge. I'd estimate 1/2 of the calories I was consuming a day were processed sugar type things. I do feel a little better, but that could just be my body saying thanks for not keeping it a garbage dump!

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Andrew -

I have MS, I have had varicose vein surgery on the left leg which is the leg affected by MS. I have a brother with MS who has also had varicose vein surgery.

I have a bed wedge (normally used to raise the legs). I will start using tonight - it sure can't hurt and it would be great if it helps.

Sharon

Hi Sharon. The most important point of IBT is that the whole bed slopes from head to toe. It is not going to have anywhere near the same effect tilting half of the bed and having your legs either flat or raised, as is the case with adjustable beds.

It is very interesting that both yourself and your brother have varicose veins and both have multiple sclerosis. Thinking of setting up a poll question about this relationship. Think it might prove very interesting.

Also worth remembering that Alun, whose veins are shown on the Nakedscientists forum reported that more swelling is observed in higher humidity. Again very important from the theory standpoint.

Andrew -

I understand about the tilt of the entire bed - I think I have resolved the issue short term.

You wrote:


I live in Colorado which has a very low humidity the entire year - sometimes it is 5%, so I do not think this statement will apply to me.

As a side note, I know that my veins have gotten better by using diet and supplements (maybe LDN). It will be interesting to see if I recognize any more improvement with the raising of my head at night.
Sharon

http://weather.cbs4denver.com/US/CO/Denver/KDEN.html

Hi Sharon, just had a look at the humidity 65% this was purely a random check on humidity following reading your post.

Andrew

Just checked the link you posted - right now the humidity is 24%. The humidity is not an issue here in Colorado - and, yes, during the summer months we could have less than 10%. Relative humidity in the mornings is usually higher than in the afternoons. Beutiful state to live in - over 300 days of sunshine (vitamin "D" - why do you suppose Colorado has such a high incidence of MS with all that vitamin D?)

Sharon

Hi Sharon, thanks for the information about your location and relative humidity.

The Colorado area is heavily irrigated. And lies below a mountain range. The same situation applies to Calgary in Canada, another area with higher than average incidence of ms.

Are there times when humidity is very high, for example after a rainstorm? Looking for sticky uncomfortable weather events? What about nighttimes when the irrigation is applied? There should be a connection with humidity somewhere. Did you live in the same area when first diagnosed? Would your job have involved high humidity in irrigation, or a kitchen for example?

Have you ever moved to a higher humidity area and if so did you notice a difference in your symptoms?

Thanks again for your help.

Andrew

Hey Sharon...
I think it's the altitude and the disruption of the body's nitric oxide balance. Tibetans and sherpas born in high altitude have a different genetic makeup to allow for the decreased level of oxygen available. Those who are not born in high altitude do not have this protection mechanism. It's part of the puzzle which leads to endothelial disruption and nitric oxide imbalance, but not the whole thing. Low Vit D, B12, EBV, cpn, diesel fumes, high altitude...all contribute to nitric oxide imbalance.

I remember Colorado Lars discussing how terrific he felt on his trip to hot and humid Belize...
Here's the thread-
http://www.thisisms.com/ftopict-5690-.html

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

http://curezone.com/upload/Members/New0 ... SURVEY.rtf

Multiple Sclerosis Resource Centre. Interviews from people with multiple sclerosis trialing Inclined Bed Therapy in a pilot study.

2 people on the report also have complete spinal cord injuries. Worth remembering when reading the report.

Cheer and Andrew -

In my case, I believe the main cause of the varicose veins to be heredity. My mother and my grandmother also had them and there is an 80% heredity factor with varicose veins. Now that I have them, I know there are certain things which I can do to help alleviate the pain and or the ugliness. Exercise is important and my diet.

Cheer - the altitude could be part of the puzzle, except that I was born in Colorado and have lived here all my life.



Andrew -

(1) Actually, I would not consider the Denver area to be heavily irrigated. The surrounding agriculture is dry land - Mother Nature takes care of the moisture. There are a few areas of vegetable farms but nothing like you would see in California. (2) Sticky, uncomfortable events? Yes, maybe after a rainstorm for a few hours. (3) I was diagnosed here in Colorado, and I have lived in Colorado all my life except for one year in 1961 when I went to college in Florida (could not stand the humidty and the bugs so I came back to Colorado) This was many years prior to my diagnosis. (4) I have not worked in places with humidity.

I do not discount any of the theories - I just do not think that I fit the profile. It has been an interesting discussion though.

Sharon