Dear Professor Dake,
My INR reading today after a week on 10mg warfarin is 1.7. I will hear from my doctor tomorrow on how to proceed.
I have uploaded with the help of a locum doctor friend all of the scans you gave me onto the PAX system at University College London Hospital (UCLH). This is the same hospital network which treats me neurologically. I believe that the Pax system is available for any NHS doctor to use so this may help in our quest to find another doctor to do the follow-up venogram. I believe a doctor at UCLH called Simon Morley is a cerebrovascular specialist who might be interested.
My symptoms have been steady and I continue to enjoy much improved bladder control with hardly any urgency and a full bladder when I feel urgency. This has really changed my life for the better. I can now feel confident going out and about. I also still have scarcely had any night spasms since the operation and have not needed either tizanidine or baclofen. The spasticity in my right leg and foot is also less severe on standing and my walking has become a bit better than when I last reported although not as good as it seemed in America after the operation. I have also noticed that my bowel function seems to be getting more natural. In the last year I would frequently need manual assistance to void the bowel properly but I have not done so since the operation and in the last week things seem to be moving along much more normally. I have also noticed a big improvement in appetite and I am now sometimes hungry! I have also noticed that a sensory problem that would affect my chest and face when lying down to sleep has vanished. The burning sensation which used to affect my left leg and foot on an intermittent basis has remained quiescent. Even though I describe this burning sensation as intermittent, whilst the worst of the pain would come and go, nevertheless a considerable sensory disturbance remained. This now seems much quieter than before and less extensive in the area affected. The weather which usually has a huge effect on my MS symptoms has remained extremely damp and humid this last week.
My latest INR readings from today is 1.2. My doctor, David O’ Connell has told me to take 10mg a night for the next 6 nights and we’ll retest on Tuesday.
In the last week my shoulder pain has remained fairly steady at around 2 but worse when trying to lift heavier items or play the piano for more than a few minutes. I have not taken paracetemol/ibuprofen for at least a week.
I have had quite a lot of pain in my left ear, both the inner ear and the outer ear. My left cheekbone has also been intermittently painful. My head has ached in and around the left eye area with the same sort of pain that occurred immediately after the stent placement.
Yesterday whilst crunching a bowl of cereal I thought I could feel the stent in my left side moving about a bit and it occurred to me that my jaw was somehow touching the vein area. I wonder if I have the wrong bite or an outsized jawbone.
For about a week I’ve been feeling more tired. This seems to have started when the warfarin was increased.
My MS symptoms have been a bit up and down this last week. During a period of cool but humid weather in London with plenty of rain and mist, my walking seemed less good and I’ve been using my cane when venturing forth. My right foot doesn’t seem to pick up quite as well as it did for a while in America. However I still managed to stand throughout a recent half to three quarter hour lunch meeting which I would not have managed before. My bladder has remained very much better with far less urgency. I sat through a 2.5 hour meeting and then had another half hour or so at lunch standing and I still didn’t need the toilet. This was a solid suit occasion which in the past has meant, owing perhaps to heightened stress, a need for the toilet at least every hour. I can’t believe I managed the whole event without needing to go! I also remain blissfully night spasm free which means that I am getting to sleep much more easily and without drugs. Fantastic. In short I feel that my MS symptoms have gone about 4 steps forward, 1 step back since the treatment.
waiting for baclofen to work
gibbledygook wrote:Hi Cheereo!
It is maddening for others in the UK that this is so slow and also so dependent on the skill of the radiologist/vascular specialist...
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