Gibbledygook's stents

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Re: Gibbledygook's stents

Postby NHE » Tue Mar 05, 2013 12:05 am

gibbledygook wrote:The minocycline is hard to be on as it causes severe constipation but I really think that it helps.


Are you taking a probiotic at least two or more hours separated from the minocycline?
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Re: Gibbledygook's stents

Postby CureOrBust » Tue Mar 05, 2013 12:59 am

gibbledygook wrote:The minocycline is hard to be on as it causes severe constipation but I really think that it helps
Again, not at the same time as the Mino, but Mg Oxide is know to help with constipation, without being another drug.
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Re: Gibbledygook's stents

Postby gibbledygook » Tue Mar 05, 2013 6:06 am

Hi, yes I need to remember to take the probiotic and the magnesium (I use citrate) And some capsaicin tablets at lunch and then things will move!
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 CureOrBust » Thu Mar 07, 2013 3:48 am

I think the oxide form is more aggressive on bowl movements, while the citrate form is more bio-available Mg. So, switching to the oxide form may help while still giving an inroad for Mg. If you really want to move it, try some powdered form, such as http://www.theoriginalhomozon.com/
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Re: Gibbledygook's stents

Postby gibbledygook » Thu Mar 07, 2013 4:46 am

Thanks Cureo.

I've also recently about a month ago started tizanidine 2mg and it is completely unpredictable, initially makes the night spasms worse for about 2 hours, then zonks me out for about 3 hours and then I end up wide awake with or without spasms! Do you have night spasms and does anything help to stop them?

Alex
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 CureOrBust » Fri Mar 08, 2013 1:37 am

I do not get night spasms, however have had issues with restless leg at night, keeping me awake. 2 tablets of Mag Citrate have helped historically, but of recent, they do not seem as effrective.
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Re: Gibbledygook's stents

Postby gibbledygook » Fri Mar 08, 2013 3:37 am

Thanks Cureo. I doubled the dose of tizanidine and this HAS helped hugely. Apparently 4mg is the conventional amount not 2mg as prescribed.
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 gibbledygook » Tue May 07, 2013 6:49 am

Wow, excel has changed or Word has so it's taken me ages to get my last chart up on the scribd website. I now have to scan the chart in as Word doesn't like my excel anymore.


Anyway I have recently started on Amiloride which with betainterferon 1a and minocycline are now my main disease modifying drugs. The Amiloride has definitely been associated with worse walking but in part I think it may be reacting badly with the gabapentin which also affects my walking. I spent ages trying tizanidine and then clonazapam but both ended up worsening my walking quite significantly. I guess until I am off the night spasm drugs my walking will feel worse. Frankly the best medicine for night spasms is a big shot of malt whiskey and dope to sleep through the alcohol. Curiously amiloride which is a diuretic has had no significant effects on my bladder control. Indeed if anything this is rather better...

http://www.scribd.com/doc/140578017/End-of-April-2013-Again0001

Yay my upload has finally worked!!
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 gibbledygook » Tue Jun 11, 2013 7:05 am

Well, I managed all of about a month on Amiloride before realising that as a sodium channel blocker its effects on nerve excitability were too inhibitory and consequently my walking has become very bad. As I am also on mind bending gabapentin the walking is now very very poor. All in all I regret the last CCSVI operation immensely!
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 LR1234 » Mon Jun 24, 2013 11:26 am

Sorry to hear that Gibbs:( I regret mine too:( sad amorilide didn't do anything good for you. Are u planning on trying any other meds? Xx
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Re: Gibbledygook's stents

Postby gibbledygook » Mon Jun 24, 2013 12:21 pm

Well since the operation last year I have suffered badly from night spasms and consequently I have been on a battery of different anti-spasm meds including tizanidine, diazepam, clonazepam and gabapentin. I pick up a dose of baclofen tomorrow. Unfortunately all of these drugs make my walking worse although I cannot sleep without them due to the spasms. I am trying to get fampridine but I need to see Dr Stevenson who runs the complex spasticity clinic to get prescribed this. This looks like it may do very similar things as the amiloride in that it inhibits certain acid sensing channels. So it's possible that it modulates the immune response as well as helps with walking. But I need to pass the neurological tests to qualify for this drug.

I may restart the amiloride if I don't get anywhere with the fampridine because I think it probably helps long term and it may have felt very awful because I react badly to gabapentin which I started taking at the same time as the amiloride...
the battle never ceases!
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 LR1234 » Wed Jun 26, 2013 10:55 am

I agree the battle never ceases!!

My neuro has put in a request for me with my gp to try amorilide, to see if it helps with my ever frustrating optic neuritis. Hopefully I will be able to get the script soon,

Also been taking 200mg of holy basil in the morning and 1 zyflamend nighttime at night and my vision has improved a lot but of course it could be the natural remit of ms plus the host of other supps, copaxone and blood thinners I take....... I hope u find something that helps your walking and night spasms...not fun:(
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Re: Gibbledygook's stents

Postby gibbledygook » Wed Jun 26, 2013 1:30 pm

thanks L. Tonight I have a good lug of malt whiskey and some smoke to kill the spasms as I still haven't managed to pick up my baclofen script. But my leg is much better of the gabapentin. I think the combination of amiloride AND gabapentin was very bad on the walking. I wouldn't expect the amiloride to make your symptoms feel better. Indeed they may feel worse because of poorer nerve conduction BUT it MAY help with the long term prognosis. As MAY fampridine which is said to help about a third of patients walk better...good luck. Could do with some of that!
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 » Tue Jul 02, 2013 12:51 pm

gibbledygook or LR1234,
Have either of you recently had an ultrasound, do you know if your veins are patent. I'm considering another procedure,
but after reading about your last procedure, I'm not so sure. I read all the pages on this thread and it
looked so hopeful, I'm very sorry that you both have regrets. I understand if neither of you wish to comment. I do hope your issues
can be resolved.
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Re: Gibbledygook's stents

Postby LR1234 » Tue Jul 02, 2013 1:46 pm

I have 100% occluded left jugular into base of brain after procedure:(
If u start a topic I don't mind writing there, don't want to hijack Gibbs thread x
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