Gibbledygook's Stents

CureOrBust · Post by **CureOrBust** » Wed Sep 30, 2009 5:20 am

Its good to hear this may be showing some EARLY relief for your Alex. Patience is a virtue; and I expect you to balance the universe for the stuff I'm lacking.

I would of guessed before the operation you would of been sliding down-hill. So if you take that into account (comparison similar to a placebo arm), and overlay your improvement over the otherwise expected deterioration, the improvements may appear even greater. But what can be said with a trial of one, except, YOU enjoy!

Arcee · Post by **Arcee** » Wed Sep 30, 2009 6:16 am

What a wonderful development! So glad to hear you are past that particularly trying time with the other infections and what not and can experience other changes. I've always really appreciated, and found quite credible, your accounting of your symptoms and experience. You've been fair in your assessments, consistent in your comparisons, and have used measurable standards. How helpful for the research and the rest of us participating and following along. Thanks, and here's hoping for more good stuff for you (and all of us).

Sharon · Post by **Sharon** » Wed Sep 30, 2009 7:40 am

Alex - Isn't it a great feeling to know that you can do a little bit more? If you are like me, the improvement has kind of snuck up on me. You are walking 1.1k - five months ago a 1.1k walk would only have been in a dream. Isn't it euphoric to all of a sudden realize that you can walk a bit further? I just came back from a trip to China (do I remember correctly-didn't you go last year?). We were constantly walking - and, the stairs - they were everywhere! I surprised myself - I was able to keep up with the group (I doubt I could have done this five months ago).

Let's keep moving Alex!

Sharon

[/quote]

mrhodes40 · Post by **mrhodes40** » Wed Sep 30, 2009 10:47 am

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

Now THAT says a lot--CHOOSING to do something extra, I totally understand this too.

gibbledygook · Post by **gibbledygook** » Wed Oct 07, 2009 6:18 am

I wonder if I should be posting this in another section. It's my latest update for Prof Dake.

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!

Sharon · Post by **Sharon** » Wed Oct 07, 2009 8:44 am

Alex - it is always interesting to read how a "stenter" is recovering. It sounds like your walking has become much easier and you have more stamina. This is all great news! I also am finding less spasticity in my bad leg.

You wrote:

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%.

I had not associated my "flashers" with MS - the eye doc said mine were age related. But now that you have brought this to my attention, I'm thinking the "flashers" have all but disappeared.

Alex, please go over to the "Tracking" thread and post you CCSVI history.
http://www.thisisms.com/ftopic-8346-0-d ... rasc-.html

Great to hear from you
Sharon

gibbledygook · Post by **gibbledygook** » Wed Oct 07, 2009 8:53 am

I'm in tracking!

Doctors always put everything down to ageing when they don't have the answers. My mum's MS symptoms were always just her getting older until she started falling over.

Sharon · Post by **Sharon** » Wed Oct 07, 2009 9:02 am

Gibbs wrote

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

Oh, my goodness! This is not good news

Honestly though, when you get to be 66 years of age, sometimes it is hard to separate MS and age.

Sharon

gibbledygook · Post by **gibbledygook** » Wed Oct 07, 2009 9:09 am

66 is the new young! You're only old these days post 100!

Sharon · Post by **Sharon** » Wed Oct 07, 2009 9:18 am

Yes, I know....actually, I have friends who have more health issues than I do and they take more medicines. I am more active at 66 than I was at 50 --it is important to keep moving everyday!
Sharon

LR1234 · Post by **LR1234** » Thu Oct 08, 2009 3:45 am

Hi GG, As always I enjoy hearing how you are doing and I am glad you had a good time in Spain. I look forward to hearing your next blog

L x

gibbledygook · Post by **gibbledygook** » Tue Jan 12, 2010 9:39 am

I struggled to find my old diary entry until helped by Dialed-in. here's what I posted a few days ago:

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.

mrhodes40 · Post by **mrhodes40** » Tue Jan 12, 2010 10:35 am

pregnant

I am so happy for you!

I also think that we need to keep perspective in that the nerves are damaged and will always function less well if we are warm because they have actual scars on them. It may be immunological or it may be that.

My neuro told me years ago that all people have slowed nerve conduction in warm weather but MSers have so much less capacity that we notice it where the normal person does not. This is just a thought to add.

I also agree that it seems entirely possible esp for us with a lot of iron deposits and old immune activity that we would still have some immune activity after surgery. The whole trick will be early treatment.

whyRwehere · Post by **whyRwehere** » Tue Jan 12, 2010 10:35 am

GG, congratulations on your pregnancy, I hope it goes smoothly. The first 3 months were very hard for me, and I don't have MS, but afterwards, you should feel better. I agree with you about the UTIs and illnesses...they affect my husband badly, even when there is no fever. Generally, it is said the fever causes the problem, but it is more than that. It seems contrary, that one would feel worse, if the the immune system was overactive...you would think if that were the case, then being ill, would give the immune system something else to work on, rather than one's myelin.
Thanks for the update, and good luck!

mormiles · Post by **mormiles** » Tue Jan 12, 2010 1:06 pm

Hi Alexandra,

Wow! Pregnant at last! I know you've wanted this for a very long time. Congratulations!!! Since Steve had his 3 stents and 1 angioplasty at the end of September, he's had one infection after another. As soon as he recovers from each infection, he begins to improve (even his balance), and then wham, he gets another infection and goes through the same cycle again. If I can keep him out of airplanes and away from holiday gatherings for awhile, I think we'll see more improvement. Even so, his restless legs are calm now except when he's at his sickest with the infections, and he spends more time awake at a somewhat higher level of cognitive function. The muscle wasting is still reversing and no more purple feet. Enjoy the new life inside you.

Joyce