Gibbledygook's stents

Tell us what you are using to treat your MS-- and how you are doing.

Postby gibbledygook » Thu Oct 21, 2010 3:48 am

Cheers everyone. I'll update the CCSVI tracking thread in a mo. I might test the abilities of the UK CCSVI providers in due course!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby msdragonslayer » Sun Oct 24, 2010 10:02 am

About the bladder infections - seemingly my favourite misery - I get so many. But I guess that is one of the things that comes with having to self-catheterize. The MS Symptoms used to be horrid with an infection. Two flareups occurred within weeks. The antibiotic I was given relieved some of the infection symptoms but I had an MS flareup shortly after taking it. When the prescription was finished, the infection came back but the flareup symptoms got better. I got another prescription of the same medicine. Another flareup! So I stopped taking them after day 1 and my doctor gave me a different antibiotic. No flareup. Infection gone for over a month now.

My conclusion based on experience only: Some antibiotics trigger flareups. There is a big red note on my file not to give me that particular antibiotic again.
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Postby gibbledygook » Thu Nov 18, 2010 8:41 am

Here is my latest update for Professor Dake:

I have been on sole night duty since the beginning of November and I've been pretty exhausted as a consequence. This may have some bearing on the deterioration in symptoms especially myoclonus and walking since the beginning of the month. I have also noticed a few more movement induced phosphens and increased sensory deficits of the face. I've also had a day of twitching muscles in the face but that may have been lack of sleep which has been significant over these last few weeks. As Dr Simka noted a defective valve in the right jugular especially when my head is turned to the right I am to start using a neck/head brace at night to see if I can stabilize my head and keep the jugular veins open until angioplasty next year.


The myoclonus is basically as bad as it was just before the stenting procedure and my walking about the same. At least my bladder control remains much better with less urgency and fear of travel.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Thu Jan 13, 2011 2:02 am

Here is my latest update for Professor Dake:

I have noticed a few more movement induced phosphenes recently, I have also had to add a column for a symptom which has troubled me since the birth of Arthur and this is dizziness. I have never suffered from dizziness before but now feel dizzy on a daily basis. My walking and night spasms have been rather worse this month also. I would say that my walking and night spasms are much the same as they were before the stent operation. My bladder really is the stand out in that I now hardly ever suffer urgency whereas before the stent operation I felt urgency every hour or so. I also suffer less from hesitancy when I need the toilet although to void completely I still use massage and I am not always able to void fully. I also feel that all of my symptoms are very steady with the left leg and facial sensory deficits being very quiet.


No sign of a post-partum relapse which is good since all my symptoms are very, very steady.

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100 = the worst symptoms had felt prior to the stent operation. Above 100 symptoms are worse, below 100 symptoms are better.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby LR1234 » Sun Jan 16, 2011 3:09 pm

.....
Last edited by LR1234 on Tue Mar 06, 2012 12:18 am, edited 1 time in total.
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Postby gibbledygook » Mon Jan 17, 2011 2:36 am

Hi L,

I hope you are doing better these days. You went through hell. I hope things have settled down. I'm on the list to be scanned up in Glasgow as I strongly suspect azygous involvement as well as the dodgy jugular valve. I now think that the Edinburgh surgery will be of a very high standard. I was a bit suspicious of them at first. And I went to university in Edinburgh. Truly a beautiful place.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Top notch

Postby gibbledygook » Thu Feb 03, 2011 6:27 am

Well, I went to the Essential Health Clinic, located in a rather unpromising-looking car park in Glasgow. I was however, very impressed with Vic, the radiologist and the GP at the clinic. Vic showed me the nature of my defective valve in the right jugular and the newly noted septum in the left jugular and the poor blood flow which is a consequence of these obstructions. It was fascinating to see the defective valve and septum. It was also obviously tricky to find them and I strongly suspect that Zamboni is right; you need proper training and equipment to view these things and you won't see them if you are lacking in either. I'm booked in for angio in Edinburgh and look forward immensely to getting the blood flowing again.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Top notch

Postby CureOrBust » Sat Feb 05, 2011 5:39 am

gibbledygook wrote:It was also obviously tricky to find them and I strongly suspect that Zamboni is right; you need proper training and equipment to view these things and you won't see them if you are lacking in either.
Do you (or anyone else) know where/who actually trained them in Edinburgh? (sorry if this has been covered elsewhere, as I have been absent for a while)

gibbledygook wrote:I'm booked in for angio in Edinburgh and look forward immensely to getting the blood flowing again.
Best wishes. :wink:
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Postby gibbledygook » Sat Feb 05, 2011 7:22 am

I think they went to Italy and were trained by Zamboni or his colleagues. i think.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Top notch

Postby Rokkit » Sat Feb 05, 2011 8:40 am

gibbledygook wrote:Well, I went to the Essential Health Clinic, located in a rather unpromising-looking car park in Glasgow.

I was in Glasgow recently, it all kind of looks like that, eh? :D Charming, nonetheless.

Alex, I'm very intrigued by your finding there. For months I've wondered if even though I have stents propping open my upper stenoses, if it's possible I still have valve problems causing disturbed flow. I've never had an ultrasound.

I've been concerned that if that's the case, the stents might keep them from doing any angio in the area. Did they give you any opinion about that?

I'm really looking forward to the outcome of your upcoming treatment.
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Postby gibbledygook » Sun Feb 06, 2011 2:48 am

Hi Rokkit,
I don't expect that the stents will prevent them from doing angio. Certainly Vic, the Doppler technician made no mention of this and he was generally very informative. He said that the jugulars are principally affected by problematic valves/septa etc, so yes, the stents aren't really addressing the cause of our problems. I won't be having the angio until May, I expect.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Sun Feb 27, 2011 3:26 am

The movement induced phophenes have now practically vanished. Most of my other symptoms have been stable although the bowel dysfunction seems to have reverted to its previous level and my walking has been quite a bit worse. I also have had no headaches or noticed any left leg motor dysfunction.

Image
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Sat Apr 23, 2011 2:09 am

This is my latest update for Professor Dake:
I've noticed quite a few more shoulder spasms and facial tingling this last month. I have been focused on improving the bowel control by taking 2.5 grams of capsaicin at breakfast and lunch and this has the added benefit of keeping me very awake/alert and reducing spasticity. I have also been trying to drink more which may explain why I have felt that my bladder control has worsened a bit. My night spasms have improved a bit. The dizziness has improved enormously. I walked quite far the other day with my cane and didn't trip too badly so I think maybe that's improved. Otherwise everything has been very stable. As you can see from the chart most of my symptoms remain better than before the stent operation.

I've actually now decided to reduce the capsaicin as it reduces the spasticity so much that it makes the leg quite a bit weaker which isn't particularly helpful. It is the most amazing stuff, chilli!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Fri Jun 03, 2011 3:44 am

Latest chart, post ballooning in Edinburgh:
Image


Here are my comments to Professor Dake:
On the 22nd May I underwent ballooning in Edinburgh with Dr Reid and within 24hours or so I noticed much improved spasticity and greater ease of walking, significantly reduced myoclonus or night spasms and much improved bladder control! The improvements in the night spasms have since dissipated but the walking and bladder control remain much better. I still get shoulder spasms and facial tingling but my bowel has been somewhat better even without capsaicin although the magnesium citrate may be the factor there. Curiously I've noticed more movement induced phosphenes since the operation. The left leg sensory deficit has seemed a bit less active although there are bursts of pain on going to bed and lying down.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Wed Jul 06, 2011 1:34 am

Around the 12th june I underwent a hormonal progesterone surge from very early stage pregnancy. Immediately I suffered significantly worse myoclonus/night spasms, walking and bladder control which are ongoing. This is doubtless due to the increased core temperature and hormonal changes of the first few weeks which indubitably affect the vasculature:

Acta Physiol (Oxf). 2011 May 3. doi: 10.1111/j.1748-1716.2011.02323.x. [Epub ahead of print]

Local oestrogenic/androgenic balance in the cerebral vasculature.

Krause DN, Duckles SP, Gonzales RJ.


Source

 Department of Pharmacology, School of Medicine, University of California, Irvine, CA, USA  Department of Basic Medical Sciences, University of Arizona College of Medicine, Phoenix, AZ, USA.


Abstract

Reproductive effects of sex steroids are well-known; however it is increasingly apparent that these hormones have important actions on non-reproductive tissues such as the vasculature. The latter effects can be relevant throughout the lifespan, not just limited to reproductive years, and are not necessarily restricted to one gender or the other. Our work has established that cerebral blood vessels are a non-reproductive target tissue for sex steroids. We have found that oestrogen and androgens alter vascular tone, endothelial function, oxidative stress and inflammatory responses in cerebral vessels. Often the actions of oestrogen and androgens oppose each other. Moreover, it is clear that cerebral vessels are directly targeted by sex steroids, as they express specific receptors for these hormones. Interestingly, cerebral blood vessels also express enzymes that metabolize sex steroids. These findings suggest that local synthesis of 17ß-estradiol and dihydrotestosterone can occur within the vessel wall. One of the enzymes present, aromatase, converts testosterone to 17ß-estradiol, which would alter the local balance of androgenic and oestrogenic influences. Thus cerebral vessels are affected by circulating sex hormones as well as locally synthesized sex steroids. The presence of vascular endocrine effector mechanisms has important implications for male-female differences in cerebrovascular function and disease. Moreover, the cerebral circulation is a target for gonadal hormones as well as anabolic steroids and therapeutic drugs used to manipulate sex steroid actions. The long-term consequences of these influences are yet to be determined.

© 2011 The Authors. Acta Physiologica © 2011 Scandinavian Physiological Society.



PMID: 21535417 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/21535417

I really think neurologists should advise women that owing to the increased core temperature of early pregnancy and hormonal changes that they are likely to feel a good deal worse at least in the first few weeks.

I look forward to a collapse in my blood pressure and significantly worse cerebral hypoperfusion to add to the joyous experience that neurologists so often claim women experience during pregnancy.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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