Born: Liverpool, lived in several counties up and down the UK, now living in Kent since diagnosis.
MY HEALTH HISTORY AND CURRENT PROBLEMS :-
PPMS Diagnosed 1991.
My biggest health problems are back related, and go back 30 years. Sacroiliac Joint Dysfunction (left) Osteoarthritis L4&L5, Scoliosis, (right convexity with apex at L3) Leg length difference of 1" Migraines and bouts of Interstitial Cystitis. Selection of extremely large fibroids treated and shrunk by 50% with embolisation 5 years ago (my best option at the time) continued usage of progesterone cream for over 6 years for 2 weeks of every 4 Waiting for menopause, no sign yet!
Otherwise general good health, No major illnesses
Legs mostly affected, fulltime wheelchair user since 1993/4. Both hands affected, left more so than right. Spasms, mostly originating from back, leg spasticity and clonus.Lack of balance and sensory problems. Eyesight fairly good. No speech or cognitive problems, I'm still as slow as I was!
Please include any of the following that relate to your particular circumstances and delete those which do not:
Back pain, back aches, lethargy, spasm, clonus, feeling cold in bed, low blood pressure, extremely cold lower limbs, feet and hands, swollen ankles and feet mainly, restless leg syndrome, poor circulation, chilblains, lethargy, depression, spasticity in legs, snoring, poor sleep, (fall asleep quickly, then wake shortly after) loss of skin sensitivity from ribcage down, lack of balance. migraine headaches, pins and needles, night sweats, cramp, few urine infections, tend towards constipation, mouth ulcers, scoliosis,
Lesion locations (most affected side, if known), number:
Several ovoid subcortical and periventricular lesions which number more than 9 + evidence of infratentorial and cerebral atrophy (taken from hospital letter 2007)
Steroid intervention twice with absolutely no affect. Tried LDN for 6 months with no obvious beneficial affect, plus the unfortunate side effect of it keeping me awake, but would try again at different dosage.
Self styled treatments
Sun Ancon Chi Machine, which was purchased to help with back problems and suppleness (it does when I am able to get on the floor to use it!) An unexpected benefit was a huge improvement in foot and ankle swelling when used for 20 mins per evening
DKN Vibe-trainer, to help keep leg strength, used for 5 minutes most days.
Have you had testing (and possibly procedure) for blockage yet: No
IBT started 23th January 2010
Bed raised to 4.5". 12cm with Medeci furniture raisers for bed legs. Memory Foam mattress. First week;
30.01.2010: Comfier than I would have imagined, but can feel slight traction, able to stretch legs out for short periods (haven't done that for years) legs warmer and no nocturnal bathroom visits.Lower legs and feet warm in bed at least.
06.02.2010. Back is becoming quite troublesome, restless legs increasing plus 'electrical' back spasms. Impossible to get up in the mornings on my own as legs collapse under me with back pain.
20.02.2010. Impatient to get to next stage, and raise bed to 6.75".17cm. Determined to overcome back pain, unfortunately spasms and restless legs increase. Feet and ankles very swollen. Feelings of traction extremely uncomfortable.
04.03.2010. Reluctantly admit defeat and decide to go back to 4.5" to see if any improvement...
13.03.2010. Took a few more days to begin to stabilise but less back spasms now and legs stronger on rising.Feet and ankles still slightly swollen.Constipation improved vastly! Managed to stand almost erect between getting out of bed and sitting in wheelchair (that's a first in a very long time!) Back pain improved substantially.
Will stay at this height (4.75") for the next 4 weeks I think...
12.04.10 Finally managed to move back up to 6"
It was delayed because of my dad passing away 2 weeks ago and so I have spent the last 2 weeks in strange beds...interestingly, the hotel beds were fixed so couldn't alter them, but the nearest I managed to an inclined bed was a good air mattress with pillows underneath at the head end
Back on track now hopefully!
We were spending very disturbed nights at the height of 6" - waking constantly to haul ourselves back up the bed so have reduced the height down slightly to 5".
This height seems to suit us very well now. Nothing else to report yet.
Thank you very much for that information!
I started off using Emerita Pro-gest when I first started using it, but then was unable to get it last time it needed ordering. I am now using Wellsprings 'Serenity' which I have checked and does not seem to contain any parabens. I have been told (after a recent ultrasound) that the calcified remains are still there after the embolisation (5 years ago) I'm not quite sure what happens to them now, but I carry on taking the progesterone cream as a precautionary measure, as it also keeps my periods regular. I had been wondering if I should be using it for more than 2 out of 4 weeks, thanks for helping me decide on that one, it is very much appreciated
A very belated re start of IBT subsequent to various life's events unfortunately, but now right back on track - and to make sure that we never sleep flat again hubby sawed the legs off our bed!
I am now EDSS 8 but apart from that my PPMS history is much the same - I still take no medication and think I have fared fairly well because of that.
In the past couple of weeks since re-starting IBT my half moons have increased from having only the one on my thumb to now having at least 4 maybe 5! Hubby reports much the same. Sleep is far superior with us both looking forward to our night time therapy of choice Night time visits to loo very much improved. I have noticed (might be a complete coincidence) that my nose will suddenly start to run in the last couple of weeks - and if I did have a sinus problem I wasn't aware of it? I am quite sure that whatever or why that is happening is all to the good!
Just wanted to report back on the very subtle but obviously positive improvements in just 7 weeks. Roll on bed time!