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Posted: Wed Aug 15, 2007 11:14 am
by Lyon
AllyB wrote: Dom is either in denial or just a young whipper-snapper with no respect...
Hi Ally, now how could I disagree with something so poetic! Dom is welcome to consider me a great uncle, as long as I'm the great old Uncle he lends money to! :lol:
AllyB wrote: but I console myself with the fact that no-one has yet asked me how old my "grandchildren" are...
When my kids started school it used to just make me irate that I was quite often asked if they were my grandchildren....that is until I noticed one of my classmates from school with a youngster at a school function and I made the mistake of asking if it was her grandchild :oops:
Bob

Posted: Thu Aug 16, 2007 12:34 am
by Wonderfulworld
Hi
thanks Ally and Dom for replies too! I have to be honest and say this thread has gone over my head - brain not working properly today, as I've now come down with a heavy cold :) - not my week!!

But to mention your msg Ally (thanks for congrats), my low dose aspirin is ok to use for people who may need it, but I have read too that in the normal person aspirin is not recommended at all during pregnancy. Just the obs thinks that although my bloods were normal there may be some clotting issue that is not showing up on the tests when I had the miscarriages. You are good to warn me though.

I know of 2 people, both in their late 50's, who had a bleed in their eye and actually lost their sight in that eye permanantly, so I HAVE to get this checked out for my peace of mind.

So Dom I've taken your advice and have an appt with GP tomorrow (that was the earliest, all of Dublin must be ill at present), so I'll let you all know what his take on the kaliedascope is............

Posted: Thu Aug 16, 2007 5:13 am
by TwistedHelix
Bob,
I think what I was trying to get at was that, instead of having a preconceived notion of what constitutes " early" MS, (their subjects were diagnosed with acute MS, and I didn't see any mention of how long they'd been diagnosed), these discoveries led the researchers to conclude that activation of endothelial cells, with its avalanche of consequences, may actually BE the primary event and could be the definition of early MS.
I agree totally that trying to call the date of diagnosis the beginning of the disease is absurd, and trying to predict the future course with such faulty reasoning is doomed to failure.
The words you put in my mouth seemed pretty correct to me.

I've been thinking a bit more about it, (a rare event), and I've ended up with this picture in my head:
Suppose these vascular events, (ischaemia etc.), are going off like little bombs all over the place in the micro vessels of the MS brain. Some people will feel the damage as an attack, but with spare capacity and a little bit of rewiring they will recover almost completely, (RRMS). Over time all the spare capacity has been used, and the blood products which have entered the brain prevent any attempt at rewiring so each bomb blast is experienced without any potential for recovery, (SPMS). An unlucky few have had their spare capacity destroyed first, so by the time they experience symptoms there is nothing available to use for recovery, (PPMS).

Ally, caffeine is added to some pain medications to enhance their effect. I think this is because it dilates blood vessels, and headaches can be caused when they are constricted.

Okay, okay, time to come clean. (takes a deep breath)... No more denial...
My Name is Domenico, and I'm 46 years old...

Posted: Thu Aug 16, 2007 11:53 am
by AllyB
Hi WW

Sorry about the wandering thread - totally my fault, I got a bit carried away - blame the lowered inhibitions and impulse control of ms....Glad to know that you are seeing a doc - bleeds don't always result in total or permanent loss of vision, and I just mentioned it because of the asprin - it is probably just some weird ms thingy. Interesting that you live in Dublin - I was born in Belfast, though obviously I moved to S. Africa some years ago (but not early enough to reduce my risk for ms)! Ireland is great, so beautiful.... Please keep us posted on how you are doing.

Bob - you know you #ucked-up and it takes a real man to admit it and learn from it - this wisdom would be wasted on the young!

Domenico - great to meet you old man....just a turn of phrase, surprising how apt they can be :wink: You are even older than me - I suddenly feel freer somehow....Wow, thanks for sharing the real nitty-gritty
I was under the impression that a lot of headaches come from dilated blood vessels (angina meds dilate blood vessels and cause bad migraine type headaches), and I thought that the caffiene may constrict them (that would be why they advise you to avoid it during pregnancy so the baby's blood supply is not compromised), but then, if it constricted them, it would raise blood pressure, thereby also causing headaches, and also not good for baby...But if it dilates them...Hmm, lots to ponder! Thanks for that. I saw my neuro today and left him withthe rebif/lipitor study, so he has something to ponder too. My RRMS seems to have some SP signs now as I have got a little worse since my last visit, with no noticible relapse to blame....But I am doing ok still. He gave me some tabs with paracetamol, codeine, ibuprofen, and caffiene as a combo for headaches, so will give them a go.
Your vascular hypothesis is interesting and seems logical -I am in awe of the depth of thought you have given this...

Bob, Dom, WW - thanks so much for allowing me to communicate like this with you guys, it is really great to meet you all and a priviledge to interact on this site (not being soppy, so don't cry, now - just really grateful to have found this "family").

Posted: Thu Aug 16, 2007 1:21 pm
by Lyon
TwistedHelix wrote:I've been thinking a bit more about it, (a rare event), and I've ended up with this picture in my head:
Suppose these vascular events, (ischaemia etc.), are going off like little bombs all over the place in the micro vessels of the MS brain. Some people will feel the damage as an attack, but with spare capacity and a little bit of rewiring they will recover almost completely, (RRMS). Over time all the spare capacity has been used, and the blood products which have entered the brain prevent any attempt at rewiring so each bomb blast is experienced without any potential for recovery, (SPMS). An unlucky few have had their spare capacity destroyed first, so by the time they experience symptoms there is nothing available to use for recovery, (PPMS).
Hi Dom,
I've got to admit that the deepest thought I've put into vascular events revolve around lesion being scar tissue....damaged, ruined or at least no longer well functioning virgin tissue. Combine with that my personal belief/assumption that parts of the brain atrophy because they are separated from full use by restrictions caused by the lesion and it seemed to me that promoting circulation might keep the atrophied tissue viable to some point in the future, at which point the medical community might be able to salvage it.

I imagine that you know a lot more about research into the vascular situation than I do and, if nothing else, your little bombs theory sounds like an interesting alternative to my favorite Atari game, space invaders. If you and I can develop an "MS Invaders" game for Wii, we would both be set financially for life.
TwistedHelix wrote: Okay, okay, time to come clean. (takes a deep breath)... No more denial...
My Name is Domenico, and I'm 46 years old...
Holy Smokes!! 46 years OLD!! I had heard that your Mom insisted you wear shoes when you were younger but I hadn't realized it was out of concern that you might burn your feet because the earth's crust had yet to cool at that point in time!! :twisted:
Bob

Re: Kaleidascope/blind spot in right eye

Posted: Fri Aug 17, 2007 3:34 am
by NHE
AllyB wrote:that would be why they advise you to avoid it during pregnancy
Here are some additional thoughts on caffeine and pregnancy from the Mayo Clinic.
Pregnancy

Studies in humans have shown that caffeine may cause miscarriage or may slow the growth of a developing fetus when given in doses greater than 300 mg (an amount equal to three cups of coffee) a day. In addition, use of large amounts of caffeine by the mother during pregnancy may cause problems with the heart rhythm of the fetus. Therefore, it is recommended that pregnant women consume less than 300 mg of caffeine a day. Studies in animals have shown that caffeine causes birth defects when given in very large doses (amounts equal to 12 to 24 cups of coffee a day) and problems with bone growth when given in smaller doses.

Breastfeeding

Caffeine passes into breast milk in small amounts and may build up in the nursing baby. Studies have shown that babies may appear jittery and have trouble in sleeping when their mothers drink large amounts of caffeine-containing beverages.
NHE

Posted: Sun Aug 19, 2007 10:28 am
by Wonderfulworld
Hey guys
just to update you on the eye! - went to my doc on Fri and he wants me to go to the neuro's clinic this week, asap, just in case it's a bleed. I didn't suggest that to him, just described the symptoms. He said he is guessing it's one of my "weird MS moments" but he wants to rule out a bleed. So off I go to the neuro.............
Thanks for the advice, hopefully for once, it will just be MS!

Posted: Mon Aug 20, 2007 7:03 am
by TwistedHelix
A bit more about headaches: I think they can be caused by dilation OR constriction of blood vessels, so I'm not really sure why caffeine would be added to painkillers – perhaps it's simply beneficial to increase the blood flow in order to deliver the painkiller to the affected area more quickly. In the case of migraine, it was believed for a long time that constriction AND dilation in sequence was the cause, but now it is thought that the firing of neurons in the brain stem causes vasodilation in a specific area.
Bob, Ginkgo Biloba has been experimentally proved to improve memory deficits in people with MS, and its method of action is to increase blood flow. And yes: Mum did make me wear shoes, but that was in case I trod in the dinosaur dung.
Ally, I agree totally about this site: it's such a privilege to be able to talk, share information and opinions, and discuss our experiences. I sometimes find it hard to believe that we're having these discussions across thousands of miles, (and sharing them with people who, although interested, don't wish to join in).
WW, you're the second person whose symptoms we all hope are " only" MS, (Loobie is the other one). I hope your neurologist has something positive to say,

Posted: Mon Aug 20, 2007 7:34 am
by Lyon
TwistedHelix wrote:And yes: Mum did make me wear shoes, but that was in case I trod in the dinosaur dung.
Hi Dom,
It's not nearly as much fun to pick on you when you "one up" me while I'm at it :evil:
Bob

Posted: Mon Aug 20, 2007 7:54 am
by AllyB
WW - so glad you went to your doc, and I am glad he is sending you to the neuro - at least you will have peace of mind, and like Dom, I hope he has something positive to say...Will be sending positive thoughts your way.
Dom, I believe that there are several drugs around that are supposed to help memory, particularly in the elderly with senile dementia, by increasing blood flow, so maybe there is something in that. Personally, I suspect that the caffeine is just added to lift mood and make us feel better... :lol:
Bob & Dom, I guess between you two, you can vouch for the truth of evolution over creationism, seeing as your misspent youth involved dodging the T-Rex's!

Posted: Mon Aug 20, 2007 11:05 am
by Lyon
AllyB wrote:Bob & Dom, I guess between you two, you can vouch for the truth of evolution over creationism, seeing as your misspent youth involved dodging the T-Rex's!
Dom's just a kid really. It's just that for some reason I really enjoy picking on him about being old :lol:

As a REAL old guy about all I had to deal with as a kid was the five mile walk to and from school, uphill both ways.

Bob

Posted: Mon Sep 03, 2007 10:47 am
by Wonderfulworld
Hey you guys
I promised to tell you what was wrong with my eye when I saw neuro.
Only saw them today (good thing it hadn't happened in the meantime) - that's an emergency appt in Ireland for you!
Well, the good news is that it was an atypical migraine.
Apparently some people get migraines without pain etc, and that's what happened me. I've never had one before so I didn't recognise it.
Whew.
Thanks for the advice.

Posted: Mon Sep 03, 2007 5:20 pm
by Lyon
Thanks for letting us know WW. I've noticed that if I take a couple of ibuprofen at the first sign of anything funny, it usually controls the situation.

I'm glad it wasn't something worse.
Bob

Posted: Tue Sep 04, 2007 12:45 pm
by AllyB
Hi WW

That is great news - you must feel so relieved! At least you now know what it is in case it happens again (hopefully not) and won't get stressed.

Hope all is going well in every other area too - please keep us updated on your preganancy too - looking forward to some pics of the bambino when the time comes, we wan to share in the "normal" joys of life.....

Thanls for the update and all the best.

Re: Kaleidascope/blind spot in right eye

Posted: Tue Sep 04, 2007 11:24 pm
by NHE
Wonderfulworld wrote:Well, the good news is that it was an atypical migraine. Apparently some people get migraines without pain etc, and that's what happened me. I've never had one before so I didn't recognise it.
Whew.
I had several pain free migraine attacks exactly as you have described them. These occurred when I was much younger, probably around 12 or 14. I haven't had them since but I did discover at the time that they could be induced by applying slight pressure to my eye.

NHE