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Terri Relapsing remitting ms. Letter to the editor of New Pathways Magazine Formerly the MSRC

To gain an understanding of what is likely to happen to you, read this letter from Terri Harrison who for 11 years has remained virtually symptom free. Terri is on my Facebook account friends list, feel free to contact her she would love to hear from anyone.

http://www.msrc.co.uk/downloads/npwm_2002_0011.pdf
Pathways Magazine: Multiple Sclerosis Resource Centre: MSRC

What was published:

Bed Raising Helps
Dear New Pathways, Since sleeping with the head of the bed inclined 6" higher than the foot, I have been in remission for longer periods of time - with instant relapse if I sleep flat. Teresa (Terri) K. Harrison

What Terri Wrote:


Dear Ms. Graham,

I have been asked to write to you to describe how I have been successfully dealing with my Multiple Sclerosis symptoms. I communicate regularly with those who are certain that the ABC drugs are the only way to assure no further progression, yet I feel that they are overlooking something completely safe and effective which has helped me greatly!

I was diagnosed over three years ago with relapse/remitting MS. This was after some ten years of strange symptoms that went undiagnosed. My symptoms began with numbness/tingling (pins and needles sensation) from my shoulders down. That lasted several months. I went to a massage therapist that said my muscles were tight and had my lie on small rubber balls along my spine to help stretch those muscles. Whether that or simple a remission helped, I'm not certain. The tingling was accompanied with a strange sensation when I tilted my chin down to my chest. I found out after the MS diagnosis that this is L'Hermitte's sign and was nearly an assurance of MS. I wish someone had told me that then! My family doctor has little experience with MS and didn't refer me to the proper specialist with such strange erratic symptoms. About five years ago I had a problem which came on suddenly as I was driving. I experienced double vision. I immediately went to an optician to get a pair of glasses. Yet I complained that they didn't help much when she prescribed bi-focals at age 33! After a few weeks a changed to a pair of single vision lenses that I wore for some time. Other strange feelings from the on-set was a feeling that my skin was burned. It was super-sensitive to the lightest touch. My doctor diagnosed a muscular problem and gave my muscle relaxers. They only made me sleepy and the problem would come and go erratically. I noticed that a chill would bring this feeling on and taking a warm shower with gentle massage could get it to pass more quickly. Sometimes the feeling would take weeks to pass and I could get it down to days or hours with the warm massage.


The queerest thing that happened to hasten the MS diagnosis was when I woke up one morning totally without central vision in my left eye. I went to the hospital and they did a CT scan and other tests with no diagnosis. A few weeks later I got an appointment with an ophthalmologist. After observing that I had no pupil reaction to light with no other problems, she asked if I had ever been diagnosed with MS. I told her I has no diagnosis and she suggested that a neurologist would most likely agree with her that that was the correct diagnosis. She told me I was experiencing Optic Neuritis and that it would like pass in another three weeks. She was precisely right!
After a second episode of Optic Neuritis with the same eye and not quite such a drastic loss of sight, I had an MRI of my brain. The radiologist who read the results gave a certain diagnosis of MS. I followed up with a visit to a neurologist.I was terribly fascinated with the MS diagnosis. I knew very little about this disease and read everything I could. While I was looking for information on the internet, I was looking for specific suggestions about relief from a hot, burning sensation, different from anything I'd felt before.


One link took me to a page when Betty Iams was suggesting a possible hint for MS sufferers. She suggested that she had this burning feeling and she had a great deal of trouble walking. I had been noting a little trouble with walking, but a great deal of this burning. She also indicated that the need to get up to urinate during the night interrupted her sleep. I had a little trouble with this too. She suggested a study that she was involved in for people with MS who were not on any other medications. She had tremendous results and it seemed silly not to give it a try.


Betty's suggestion was from Andrew Fletcher. Andrew has done extensive research, which originally began when he discovered how trees raise water. Andrew found a way to use gravity to lift water higher than was originally thought to be possible using current physics theory! Through extensive research, Andrew took his theory further by relating the new laws of physics to how our human bodies function. His theory is that all of our bodies contain mineral salts and sugars and that when we lie flat they accumulate, without being circulated or removed by the bladder. These minerals may be what is "eating away" at the myelin causing the MS symptoms. Andrew's thoughts suggest that sleeping with our body inclined slightly, we increase the body's own circulatory system washing away the minerals that are at fault. My first thought was one of confusion over the scientific principals, but that the notion of simply raising the bed seemed so simple that I had to try it. I placed two plastic crates under the frame of the bed. I measured and that was only 5 inches higher at the head than the foot, but was the best I could do easily. The first night I tried this, I noted that the burning in my leg was gone and I didn't get up during the night. My husband hated it since we slid down to the foot and wasn't going to do it again. I put us back flat and went back to the burning feeling right away. The next night I was ready to send him to the couch! I was going back to inclined. I did add a footboard to ease the sliding down problem.

 

For three years I have been sleeping in this position. I have had no further major symptoms with MS. I do have an occasional problem usually aggravated by stress or lack of enough sleep time. I had an occasion to sleep flat in a hotel for one night and I had an episode of Optic Neuritis that passed the very next night I was back to my own bed! The bed has helped my husband with his gastric reflux and we both snore much less! Neither of us would go back to sleeping flat. I have modified the plastic crate method of raising the bed. We now are using plastic PVC pipe that the legs of the bed simple fit into and the frame rests on top as if we'd simply extended the legs. The head of the bed is 6 inches (15 cm) higher than the foot of the bed. The only medication that I take is .5 mg of Xanax to assure a solid night's sleep and cholesterol medication, 20 mg of Zocor. Sleeping inclined was certainly helpful for me. I recently had another MRI. "There are no enhancing lesions to suggest acutely active plaques and no other contrast-enhancing lesions are depicted on the MRI". This is in stark contrast to the MRI three years ago! My only lingering symptom is some loss of feeling in my left hand. Increased use and exercise seems to improve its condition slowly.


Terri Harrison

By the way...I used the PVC pipe with I travelled to Trinidad. It worked perfectly!!! I didn't get a lot of sleep while travelling, but a single night in "my" bed put me back to normal!!

Had dinner where I had previously told the waitress about sleeping inclined. She has used over 8 kinds of medicine, including interferons, for her MS. She didn't see anything wrong with trying the bed - and it didn't cost her anything (her other meds cost more than she makes!!) She is very happy to report that it is working!! She doesn't have the muscle cramping and some of her other symptoms have stayed in remission!! She wanted me to thank you for all your work to get her where she is now - after only a month or two!! (She has been diagnosed for over 15 years)

Replies from Terri Harrison

I truly have had a wonderful experience sleeping inclined since February 1998 when I was diagnosed with Multiple Sclerosis. At that time I was looking for information and ran into someone with similar experiences to mine - I found someone who had some pain and other symptoms. She was recommending sleeping inclined and put me in touch with Andrew.

What he offered involved no pain or money (my kind of therapy!!) I used a couple of large books to prop on the frame of my bed (how easy!!) The very first night, the symptoms subsided. That was amazing - but my husband complained about sliding down. I thought - no problem, it worked. I removed the books and slept flat again. The pain came right back! I suggested my husband could sleep on the couch or get over it.

We have both been sleeping inclined ever since. My neurologist asks me during my annual visit how I'm doing. I've had subsequent MRI's and there is no sign that I'm progressing negatively. The doctor reminds me that MS isn't supposed to get better (but I appear to be!) Smile

Beginning in a few days I'm going to start toward a degree in nursing. My doctor is encouraging my studies - he doesn't foresee any problems with this rather serious endeavor. The MS is not a problem for me. I try to stay in touch with my body and take it seriously if it tells me I'm tired or too hot or cold. The best thing for these "problems" is to go to bed and get some rest. It has never failed to restore me to where I was before I was ever diagnosed with this "debilitating" disease!

Feel free to contact me at tharri8896ATbex.net if you have other questions! Replace the AT for @ to talk to Terri

Terri Harrison
USA

Quote:

Question on thisisms  forum:  Terri,

Curious minds would like to know . . . What has it been like to spend 11 years with MS on a tilted bed?  How old were you when you started? How has it helped you? Has your MS progressed at all since you began this therapy?

I am looking forward to hearing from you, and I am sure that others will find your experience interesting and encouraging, too.

Reply:
Terri Harrison
28 May at 03:35
I was 34 when I was diagnosed with MS. I was lucky enough to find about about the tilted bed right away. My husband complained about falling off the end, but I found an old headboard and we used it as a footboard and that stopped the problem.

I have experienced some occasional flare-ups, but nothing that hasn't passed completely. I occasionally "play" with the height at the head, but if something flares up, I go for a higher setting for a few months (or more) and it ALWAYS works!

"Marrital" relations are a big more challenging on an incline, but who says we can't use a different bed (the guest bed?) for that? It's not like I intend to SLEEP. Sleep is serious business to only be carried out on the inclined bed for my nightly MS therapy.

Even on vacation, I take my PVC pipe pieces to prop up the head. I have wondered what the airline screeners thought about the pipes in my suitcases!

Terri Harrison