Denise IBT Progress

Name:_Denise
Female: Age:54
Date(s) Diagnosed MS 2008
Lesion locations (most affected side, if known), number of lesions 14 (12 small 2 large)

MS HISTORY AND BENCHMARK PRIOR TO INCLINED THERAPY

MY HEALTH HISTORY AND CURRENT PROBLEMS :--

Unbeknown to me I probably had ms for some years but was not diagnosed until I was hospitalised and referred to a neurologist.

I woke up one morning in 2007 with one side of my face completely dead (not dropped) and the mother of all headaches, visits to doctor and doctor calling I was admitted to hospital as morphine would not kill the pain. After some months ms was diagnosed. My symptoms mainly are headaches 24/7, no energy, still till this day you can stick a pin in my face on one side, vision problems, I lose grip for a few seconds in right hand, (many broken items) it can be freezing and I am burning up sweating, no grip strength at all, back pains that started at the same time as the headaches, varying blood pressure, snoring the last 4 years, sensory lose, pins and needles, cramp, the odd balance problem. Although the constant headaches put me in bed quite often I do sometimes after reading other peoples symptoms feel lucky that I do not have any mobility problems, which I keep expecting.

GENERAL GEOGRAPHICAL LOCATION:
South coast of England approx 5 miles from Portsmouth
Altitude:

MS treatments and results:
Number of relapses in the first and second year before I.T. intervention: 0

Number of relapses since starting Inclined Therapy intervention: 0
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):

EDSS as of this update (self-assessed or physician-assessed?)

FSS as of this update:

MSIS as of this update:

Have you had testing for CCSVI blockage yet: (Y/N) N

Have you undergone a stenosis procedure (Y/N) N

If Applicable: STENOSIS PROCEDURE HISTORY: Date/location of testing/procedure: Type of venographic study: (MRV, Doppler) Diagnosis: Type of procedures: Procedures/drug related symptoms: [Repeat this section if there have been more than one procedure] Number of relapses since first CCSVI intervention:

Progress reporting: At some point, ‘preferably after Four months’, during the study you may wish to revert back to horizontal rest in order to determine the differences. Please record any comparisons that are observed.

REVERTING BACK TO FLAT JOURNAL TEXT SLEPT FLAT ON (DD/MM/YYYY) UNTIL (DD/MM/YYYY) AND FOUND THE FOLLWING DIFFERENCES:-- (Repeat Entry each time you revert back to flat)

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PROGRESS REPORTING:

1st 7 day notes I.T. Tracking date:_ 06/03/2010 Raised bed straight to 6” a week ago. First night kept sliding, and the incline felt terrible. The first 3 nights felt like legs were on fire through the night. Having a 25 year old divan bed needed step ladder to climb on board.
After 5 nights legs no longer on fire now seem to sleep better as normal.

Update (2nd WEEK) I.T. Tracking date:_ 13/03/2010 This is now end of third week. My husband was so pleased with improvements so quickly after 2 weeks now have a nice new sledge bed, much closer to floor and nothing slides down. Am now sleeping better than I have for some years, My snoring has dropped so much hubby does not migrate to the spare room every night. My energy levels are now so good I last all day at work instead of running out of steam half way through the day. I am told I am now dreaming at night sometimes beating the pillow to death. Have had bad backache and neck ache for the last week, (getting a nightly neck rub).I am not getting excited but I went headache free on Wednesday, made up for it Friday but you never know. The last few days I have felt cold at times during the day, this is unusual for me. Have had the feeling of wax in one ear and slightly deaf for the last week but not wax?
Update 04/04/2010
Left it a bit longer for update this time as had a few bad days here and there.
Generally still have almost normal energy levels, still sleeping a good nights sleep, still dreaming, husband is very pleased as the added bonus of ibt is my snoring has reduced overall by 70% (apparantly).
Migrain level headaches have reduced since starting ibt, the first time for years i have some days allmost headache free.
(Have managed to get in for a Doplar scan in glasgow clinic in August).
Update 12/05/2010
Still at 6" inches and would not change.
Had a slight relapse over the last couple of weeks but that may be down to the fact that we are very busy in our bussiness and am working a good 8 hours with no down time (great) could not of seen myself even doing this before ibt.
And Andrew sorry i will not go back to a flat bed i even have hubby raising the bed in the caravan before we go away the benifites to me have been more than anyone that knows me could of ever imagined.
Update 14/06/2010
Although improved from a year ago i still seem to of relapsed, started last month and still the same get tired at end of day, headache most days again, not as bad as before ibt but still diapointing after the great improvement. Wandering if it has anything to do with warmer weather.

07/08/2010
Still here but been no changes realy, still have the daily headaches that returned with the warmer weather but some relief resently as its got a little cooler.
Energy levels are still high, no other ups or downs realy.
Glasgow on the 13th for ccsvi scan.

Update 25/08/2010
no changes from before daily headaches. still sleeping well, still make all day but worn out by end of day, (overworked)
Had Dopler scan at E.H.C on the 13th stenosise of left and right jugular so waiting now for next stage.
wish every body well

Update 27/10/10
Sorry for long gap in updates but been very busy, lots going on.
had to sleep on flat bed last month for 5 days (never again) head was worse, fatigued, and acking back.
Back to before as soon as in own bed 6" incline great.
Started LDN six weeks ago i believe that is also helping only 1.5 ml at the moment going to increase to 2ml this week.
Am going for liberation treatment in bulgaria on the 24th november excited but scared.

Update 19/11/10
Nothing bad to report, now on 3mg LDN doing very well, headaches only realy bad for 50% of the time.
My energy levels have slowly increased since starting ibt and now are proberbly as would be exspected at my age. Go to have liberation treatment wed so keeping fingers crossed that it helps.
If the treatment was to releave the head problems it would be great.

Thanks for updating Denise and congrats on doppler appointment.
I have not had a migraine headache since we tilted our bed. 17 years without a migraine is a much welcomed result.