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I even crossed the road to examine better a house's aspect as I wasn't so desperate to sit down that all my thoughts were only on getting to a seat

Dear Professor Dake,

Thank you so much for your review and reply and I apologize for not responding sooner but I have been away in Spain.

I am pleased to report that in the weeks after I stopped trimethoprim my MS symptoms improved drastically! In Spain I walked the furthest that I have walked in one fell swoop since getting the illness in 2004. However I did manage this walk in Spain with a cane so it’s isn’t an exact comparison with my previous record.

I attach an excel spreadsheet which compiles my symptoms and how they have been before and since the operation. I also reproduce the previous written report for a bit more detail.

If my symptoms at worst have been 100% which would be an EDSS of 6.5, these are my percentages now:

My bowel function remains pretty much unchanged and is about 100% of its at worst presentation.

My bladder control has been much, much better and is back to how it was after the operation at about 50% of its at worst presentation. Immediately prior to the operation my bladder was 100% ie at worst.

The spasticity in my right leg has gone back to how it was before the bladder infection and is about 60% of at worst. Immediately prior to the operation the spasticity was 90%, close to its worst.

The night spasms disappeared after stopping the trimethoprim and I had a glorious fortnight of no spasms at all. The last week was spent in Spain where a certain amount of red wine was consumed. Usually when I drink red wine the spasms disappear for the nights on alcohol and make a vigorous return on abstinent following nights. And so it has proved; since my return to the UK and no alcohol, I have had some very faint night spasms but they are very much weaker than they have ever been. I give them a 55% of at worst. Immediately prior to the operation, these spasms were at 100% or at worst.

My movement induced phosphenes have reverted to being rather rare and are as they were after the operation at about 20% of at worst. Immediately prior to the operation these were at perhaps 60%.

The sensory deficit in my left leg has also gone back to a state of quiescence and is as after the operation at about 40% of at worst. Immediately before the operation this deficit was at about 70% of worst.

The sensory deficit which has in the past affected my face and upper torso is still a bit noticeable and so is about 30% of at worst. Prior to the operation this symptom wasn’t at its very worst so maybe before the op I was at 60%.
This symptom was a relatively new symptom.

The sensory deficit which has affected my right hand has been static. Overall the hand is about 50% of its worst presentation. Immediately prior to the operation this symptom was also at about 50% of its worst moments.

The swallowing/choking incident which I had about 3 to 4 weeks ago has left something of a psychological scar. Whenever I drink now I hesitate a bit so I’m still worse than I was before the choking incident. So I’ve left this at about 20% of its at worst presentation. Immediately before the op this was only at about 30% of at worst presentation.

I had a great day walking on a hot, dry day in Spain. I managed 1.4km without break but using a cane. My previous record has been 1.1km without a cane. In the latter instance I promptly fell over and could really barely manage the 1.1km. However in Spain the 1.4km could conceivably have been extended. I can’t wait for the rain to stop to try another caneless walk! I will update you immediately if I achieve victory!

My movement induced phosphenes have reverted to being rather rare and are as they were after the operation at about 20% of at worst. Immediately prior to the operation these were at perhaps 60%.

My mum's MS symptoms were always just her getting older until she started falling over.

It's been 6 months since the operation at Stanford where 3 stents were placed in my jugulars; two 4cmx1cm in both jugulars and an additional 2cmx1cm in my left jugular.

The first 3 months were great and I noticed a significant improvement in bladder control and night spasms, the latter of which virtually disappeared. I also noticed and continue to notice a much reduced spasticity on standing in my worst affected leg. However I have also noticed that when I got a bladder infection the spasms and spasticity and bladder control problems reasserted themselves to a significant albeit temporary degree. I have also noticed that since becoming pregnant 3 months ago my symptoms have generally been somewhat worse, especially bowel and bladder control but also walking which has been harder from the very first week of pregnancy. I have also noticed a deterioration in symptoms with an existing cold/sinus infection which has been very flu like but without fever. In short, infections and that would include pregnancy (!) detract from the immense benefits which I enjoyed for the 3 months after stent surgery. Clearly, this may be down to raised core temperature but also perhaps the immune/inflammatory reactions that the CNS has been producing since I became ill with MS. I think that the immune response is still probably quite strong in the damaged areas of the brain/spine and so when one has an infection of any sort one's symptoms are aggravated. This is somewhat disappointing but shows perhaps that there is a combination of immune factors and vascular ones which drive the MS process. At least, I haven't got near to a relapse state and in the year before I had the operation, I had, at least 2 disabling relapses treated with steroids.

pregnant