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Keep going Andrew We are with you

Thank you, from the bottom of our heart

Suterday marks 4 weeks into RBT. Monday I am having my 4 weekly Tysabri infusion. This is the first time I don't experience the 4th week dip ahead of the infusion. For me IBT has turnd the clock 18 months. Thank you Andrew.

Just a quick update here, as it's about 18 months now since I commenced IBT. I've had no further incidents of phlebitis since the one mentioned ages ago in this thread, and have not needed to request any steroid anti-inflammatory medication for the spinal flares either.

Last autumn/early winter, I was actually able to walk into a shoe shop and buy a pair of winter boots off the peg that fit both my feet and around my legs, so the oedema improvements have proven consistent and lasting. The swollen veins on the inside of my right knee where I was being troubled by regulart bouts of phlebitis are not visible anymore, either. Will manage to get some photos of those one of these days.
http://www.thenakedscientists.com/forum ... #msg300101

Asher wrote:Suterday marks 4 weeks into RBT. Monday I am having my 4 weekly Tysabri infusion. This is the first time I don't experience the 4th week dip ahead of the infusion. For me IBT has turnd the clock 18 months. Thank you Andrew.

Asher you are welcome. My question is if you are not getting the dip as you put it, how long will this stability hold out using I.T. before you need the drug?

Well I thought I was going through a flare after I started IBT. Almost like every symptom i've ever had was all of a sudden flaring up. But the last few days my feet have been very tingly I thought it was them getting worse. But last night I noticed that when i rubbed my feet against my legs I could actually feel the hairs!!!!

I started IBT with the attitude it wouldn't do anything. But i'm dreaming like crazy now, and have some feeling return to my feet. My balance also seems a bit better because of that. Although I still have tons of symptoms flaring up, this is more then I expected from IBT. Is flaring of old symptoms normal when starting this? I'm only 5 weeks in or so.

I started IBT a month ago, raising the bed 6". I still tend to slip down a bit and off the pillow so maybe it's effectively 4-5". The first week I had trouble falling asleep and tossed and turned quite a lot but am sleeping much better now.

I was sensitive to light for about 2 weeks but not anymore. Yes feared it was ON returning.

Improvements have been: no spasticity in legs before falling asleep (used to happen most nights), better balance, especially on getting up in the morning, warm lower left leg which was always cool compared to the right, less nasal congestion as well when I wake up. Probably a slight increase in dreams.

I am very happy I did this and feel it's doing me good. Can't imagine sleeping flat again!

My dream last night

Last night I was driving an old friends fast car Hilman Imp, that was race tuned, a car we used to pile in and wreak havoc hammering it around sharp bends with an 8 track stereo belting out Deep Purple, David Bowie, Erick Clapton and Led Zeplain. But the car was not mine, it belonged to another good friend Terry Richards. Are kids today any worse than we were?

I was belting up a hill which was familiar when a capri behind me was flashing me down and sounding the horn. When the driver got out, he come over to me and said; "Hey Andy long time no see how you doing? And how come your driving this? I thought you drove a merc? (Joey Round, known to some friends as Squary, but to me Joey) Me and Joey go right back to childhood, born in same rough old Longbank road in Oakham, Joey was a great bloke and always looked out for us younger kids.

I said to Joey, you are supposed to be dead? He said don't be daft, laughing in his usual way and we talked about his supposedly being dead. I even told him I had seen the death certificate. I then said the merc is back at home with an old Austin, Later we were in the pub with friends laughing with Joey and me saying he was dead, when clearly I was mistaken. I also met Jackie Nash, his wife who he divorced, also a very good friend and was telling her about Joey and how he was very much alive. The dream lasted for a very long time.

I was not thinking of him or Jackie or anyone in particular when I went to bed, or indeed had I thought about either of them for a long time.

During the dream, I even realised I had made a serious error on facebook Tividale Comprehensive School site adding RIP to his name and to many other damned good friends that died far too young, and needed to go back to the site and change it asap.
Jackie died of cancer a few years ago
Joey died of cancer in the throat a few years back

I have no reason why this dream was triggered but writing this and telling my wife about it is making my hairs stand on end, it was very lucid and beautiful and did not feel at all like a dream.

We can learn a lot from our dreams, but would need to find out how different brain activity is on Inclined Therapy. Alas, we would need the use of a sleep centre to determine what's happening in the brain activity at night compared to flat bedrest.

I believe that the brain needs good circulation of cerebrospinal fluid and bloodflow to organise and recall these memories. But this was much more than a memory recalled, it was truly astonishing and vivid.

I believe also, based on what happened to the girl with cerebral palsy in Kent, who walked at school for the very first time after around 8 months of Inclined Therapy and many more reports of memory improvements, that the brain uses the direction of gravity to improve circulation and restore supposedly irreversible damage.

Nicko, your post brought this dream back to me, thanks.

It is logical that some people will go back through the symptoms of ms in reverse using I.T., though fortunately not all with ms will experience I.T this way. Some have said that the tingling is like warming your snow frozen hands and feet by a fire as a child.

ive ordered my dehumidifier, hope it comes today.

ive noticed when the humidity is lower i can exercise better, so i hope the dehumidifier will help me keep this at a constant level. il let you know.

I just wanted to post that started IT back in January at 3.5 Inches and first two weeks noticed how comfortable it was, hands and feet warmer but still kept waking at night 1-3 times (not to urinate because I never really have that problem, just waking up) then we raised it to 4.5 inches and started getting more spasms and stiffness plus feeling heavy or weak in legs and psorasis seemed to get worse. Haven't been able to get back upstairs since then but am going to try this weekend to see if I can try it again.

I noticed that other people seem to have similar symptoms like mine but are improving and showing good results so I really want to keep trying the IT because I know it takes longer depending on your MS situation. Hope people continue to keep posting their results with this

I'm not giving up on IT yet!!

joyj wrote:ive ordered my dehumidifier, hope it comes today.

ive noticed when the humidity is lower i can exercise better, so i hope the dehumidifier will help me keep this at a constant level. il let you know.

Looking forward to your reports when the dehumidifier is introduced

suenz wrote:I just wanted to post that started IT back in January at 3.5 Inches and first two weeks noticed how comfortable it was, hands and feet warmer but still kept waking at night 1-3 times (not to urinate because I never really have that problem, just waking up) then we raised it to 4.5 inches and started getting more spasms and stiffness plus feeling heavy or weak in legs and psorasis seemed to get worse. Haven't been able to get back upstairs since then but am going to try this weekend to see if I can try it again.

I noticed that other people seem to have similar symptoms like mine but are improving and showing good results so I really want to keep trying the IT because I know it takes longer depending on your MS situation. Hope people continue to keep posting their results with this

I'm not giving up on IT yet!!

Those spasms and legs tightening up could well have been the start of significant improvements and indocates you will resopnd well to I.T.

People often think these initial changes are negative but they are frequently precursers to improvments.

Regarding psoriasis: http://talkpsoriasis.org/showthread.php ... post301797

Inclined Therapy is a winner for psoriasis Again the skin would react to the sudden improvements in circulation and you could have been experiencing irritation from the effects of healing rather than the flare up you expected.

It's a shame you couldn't stay with I.T.

How do you fancy trying to fastrack through the first few weeks by going for the full six inch raise?

Andrew

Well if I can get upstairs tonight is going to 6'" inches good if I missed the the last 3 weeks of being inclined?

Good to hear about the Psoriasis - I would love to clear that up it seems to also aggravate my MS symptoms too!

Well if you think raising it to 6" might be good. I only got to sleep for 2 days at 4.5" before things acted up does that matter?

suenz wrote:Well if I can get upstairs tonight is going to 6'" inches good if I missed the the last 3 weeks of being inclined?

Good to hear about the Psoriasis - I would love to clear that up it seems to also aggravate my MS symptoms too!

Well if you think raising it to 6" might be good. I only got to sleep for 2 days at 4.5" before things acted up does that matter?

My thinking is to speed your way through the first few days, which will probably be uncomfortable, and you may experience those spasms again before you become used to the incline.

Not so good missing last 3 weeks of I.T. unless you managed to prop yourself up a fair amount while sleeping downstairs, this could help lessen the effects.

My thinking on the psoriasis becoming troublesome is akin to having a skin injury and the itching that follows during the healing? Would this sound familiar to your experience using I.T.?

Psoriasis damaged skin and sweat contains far more salts than normal skin.

The theory that supports the inclined bed therapy relies on the movement of salts in realtion to the direction of gravity. So in theory, the area closest to the mattress when sleeping flat should be the area most affected by psoriasis. How does this fit with your own experience with P?


[Psoriasis. Sodium, potassium, chloride--analysis in sweat, saliva and urine--selective ultraviolet phototherapy]
Abstract It has been recognised that the sweat (extracellular area) excreted from those affected with psoriasis contains twice the amount of sodium and four times the amount of potassium in comparison to those not affected with psoriasis. According to Saalmann, after HUV therapy (SUP) there is a significant reduction of the saliva sodium content (intercellular area) not only with psoriasis patients, but with all other patients receiving radiation therapy as well. This result has never before been described in the literature. Therefore, on the one hand, completely new aspects of psoriasis and therapy can be recognized, and on the other hand, of the effects of SUP.
Authors H J Wanjura
Journal Zeitschrift für Hautkrankheiten (Z Hautkr) Vol. 62 Issue 13 Pg. 1029-34 (Jul 1 1987) ISSN: 0301-0481 [Print] GERMANY, WEST

Hi Andrew

I have managed to sleep on as much of incline downstairs as possible so I wasn't sleeping in an up right position. Still have Spasticity in legs most of the time and spasms - but no bad episodes in last few weeks now.

Will try and see if we can do the 6" rise this weekend if I can get upstairs

Interesting about the Psoriasis and the connection with sweat (salt-Potassium) because that is where it seems to be the worst when my head is on the pillow and the heat from head really aggravates it even more than during the daytime. It was also really bothering me before we inclined the bed and actually got worse when I stopped but have been using a special shampoo lately which has helped to calm it down alot recently.

Will let you know what happens!

Well, an update from me. I started IBT back after Thanksgiving, at the full 6". I have been nearly blind (about 90%) in my left eye after a bout with ON in August. Other than the last 2 nights (spent at a hotel) I have slept inclined every night. I have to say I am disappointed with the lack of results.

My vision is basically the same, with no new MS symptoms or recurrences of old ones (that's good, at least!). I sleep a little better, but I honestly believe that has more to do with sleeping in a separate bedroom than my snoring hubby (his snoring has impacted my sleep quality for years). I also slept quite well at the hotel on a flat bed. I almost wish I had some worsening symptoms or other problems, just to let me know the IBT was doing something.

So, after 3 months, I am thinking about giving up IBT. I can always wear earplugs while sleeping with my husband, and it might improve my sex life!

Has anyone else gone longer than 3 months with no appreciable results? Do you think I should keep trying, and/or move to a higher incline? Thanks!

Kathryn