Thank you Erika your reports are indeed valuable.
Now we have established that it is Inclined therapy relieving your headaches and nausea, over the next 4 months providing you avoid sleeping flat (use anything to tilt a bed when away from home) we should be able to learn whether your optic nerve damage is completely restored and your other ms symptoms follow the same route as your nausea and headaches.
If the many reports from people with ms over many years are anything to go by you are in for quite a few surprises.
Please keep a diary and note down anything unusual, whether you think it is related or not.
And please inform Dr Simka and your consultants about what we are doing as this will help prevent them from skewing results with the stent procedures. This is very important Erika and needs to be pointed out to Professor Zamboni also.
If we don’t do this then when others repeat the stent procedures and fail to get the same results as when a person with ms is sleeping inclined, it will appear to falsify any results that unwittingly included IBT as part of the regimen.
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, (Editor of New Pathways Magazine)
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 me 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.
