Gibbledygook's stents

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Re: Gibbledygook's stents

Postby gibbledygook » Wed Jul 03, 2013 6:56 am

Hi,

I had comprehensive treatment with Dr Sclafani and my jugulars and other veins are as open as they will ever be. I think the operation caused reperfusion injury. Although I may have just had a massive out of the blue relapse after the surgery...

If you go for the surgery I would definitely take minocycline beforehand and any other immune modulators such as beta interferon or whatever your poison is.

My walking is so much better now I'm off the baclofen, gabapentin or tizanidine. Diazepam or alcohol are the way forward!!

And L you are welcome to hijack my thread. It's a pretty boring tale otherwise.
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: Gibbledygook's stents

Postby dlynn » Wed Jul 03, 2013 7:44 am

Thank you gibbledygook and LR1234,
Do you think then, that it was the meds that caused difficulties with walking? I'm not taking any meds, just a low dose ASA
because I had my renal vein stented, but that was separate from my CCSVI procedure, do you ever get an occasional twinge of pain in the stented (renal vein) area still?
Thanks for the suggestions and I think it was jimmylegs that mentioned the benefits of zinc.
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Re: Gibbledygook's stents

Postby gibbledygook » Wed Jul 03, 2013 9:19 am

No, it was definitely the CCSVI operation since I deteriorated immediately afterwards and started getting bad night spasms which compounded my walking difficulties because of the useless anti-spasm meds given to me since January 2013.
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: Gibbledygook's stents

Postby dlynn » Wed Jul 03, 2013 11:09 am

Oh gibbledygook, that is aweful, I'm so sorry you're going through this. I used to get painful night (while sleeping) spasms
in my legs, mostly my right. That is the side affected by ms I'm using IBT, finally raised it to 6in. about two months ago and it made such a difference. I had no idea it would help with the spasms, but they only occasionally bother me now, such a blessing.
Have the renal stents helped with any of your symptoms?
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Re: Gibbledygook's stents

Postby gibbledygook » Thu Jul 04, 2013 2:28 am

Hi,


Unfortunately I deteriorated really quite significantly after the angioplasty and renal stent. Now I happen to believe that this was due to reperfusion injury rather than a hugely coincidental relapse. Nevertheless the effect has been the same - much worse walking and I now use an orthotic brace for bad foot drop and sometimes a cane indoors but that seems mainly necessary if I am on baclofen, tizanidine or gabapentin. Diazepam or alcohol have far more benign effects on my leg!

It is too early to say if the angioplasty has had any long term beneficial effect. I am feeling a lot more positive since stopping the anti-spasm medication but the real joy would be for the spasms to go away like they did after I had my second child in February 2012. From then until the angioplasty I had virtually no spasms and now they have been impacting my sleep and walking for the whole of 2013 so far. So walking and spasms got a lot worse after the angioplasty. Neither has improved but I'm off the counterproductive drugs now.
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: Gibbledygook's stents

Postby jimmylegs » Thu Jul 04, 2013 5:33 am

gibb hi :) sorry to see you're having a bad time. just peeking in to ask, what's your overall regimen lately? had any bloodwork?
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Re: Gibbledygook's stents

Postby gibbledygook » Thu Jul 11, 2013 9:53 am

Sorry Jimmy,

Having a mare with stuff.

Here's my latest chart, I hope.

http://www.scribd.com/doc/153192776/End-of-June-2013
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: Gibbledygook's stents

Postby jimmylegs » Thu Jul 11, 2013 12:33 pm

ok yes the chart is working. curious if you have ever had nutritional blood work done?
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Re: Gibbledygook's stents

Postby gibbledygook » Thu Jul 11, 2013 1:46 pm

Hey jimmy,

I had them done back in the mists of time!!
I take regular vitamins and supplements including vit b and d, magnesium and selenium. My diet has always been healthy...
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: Gibbledygook's stents

Postby jimmylegs » Thu Jul 11, 2013 2:03 pm

good good. do you have a copy of the results you got back in the day?
could you tell me more detail on the supplement regimen and diet? hoping there's some possibilities to help.
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Re: Gibbledygook's stents

Postby gibbledygook » Sat Jul 20, 2013 1:39 am

Hi jimmy,

You are very supportive!
When I get back from Spain in a week or so I will dig out the results.
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: Gibbledygook's stents

Postby jimmylegs » Sat Jul 20, 2013 5:02 am

sounds good, hope spain is fabulous!
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Re: Gibbledygook's stents

Postby gibbledygook » Thu Sep 26, 2013 7:24 am

So sorry Jimmy, I forgot to dig out those results. I have been rather busy since Spain which was very very hot and without air conditioning. I went to the relapse clinic after that trip as my leg was terrible and they gave me the massive intravenous 3000mg of methylprednisolone that is usually so effective. The following day I injured my knee using a new and poorly calibrated orthotic so spent the next month with even worse walking and I have only just recovered. I also about 2 weeks ago tried thymoquinone for 5 days which had a very powerful effect on my legs and vision in that my vision had much brighter colours and my walking felt bouncier but my night spasms were worse and my left foot felt more numb and odd. The evening of my beta inteferon 1a I experienced a very high temperature even whilst taking acetaminophen. So I stopped the thymoquinone and the last beta interferon 1a my temperature was normal. So I have today resumed the thymoquinone.

http://www.scribd.com/doc/171179975/September-20130
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: Gibbledygook's stents

Postby jimmylegs » Thu Sep 26, 2013 4:22 pm

wow that's a lot of meds! hope you are feeling better now
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Re: Gibbledygook's stents

Postby gibbledygook » Fri Sep 27, 2013 2:39 am

Thanks Jimmy, the thymoquinone is a VERY interesting and powerful immunmodulater. If you look at the data on it in Pubmed you will see that it enhances the effects of CD8+ antigen specific cells in vitro. Now CD8+ antigen t cells are deficient in MS, I think! My god it's complicated though. Last night I had no spasms on only 6mg of diazepam and I have needed up to 8mg in the past few months so I am feeling a bit more positive. Also this morning my walking was much better with low spasticity but we will see. I will be fascinated if I have another episode of high temperatures on the beta interferon thymoquinone combination.
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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