Spasticity Drugs: No Luck

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PointsNorth
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Spasticity Drugs: No Luck

Post by PointsNorth »

Need some help/suggestions. I've tried baclofen, clonidine & Zanaflex. They all made me extremely fatigued and dizzy. And to add insult to injury I received absolutely NO relief in the spasticity department. I will visit a rehab centre next month that has conducted a trial recently using intramuscular Botox injections so maybe these will be available to me.

I've been using a slow-release magnesium for the last 1-1/2 years with good results initially but it has not worked as well as spasticity has increased. I've tried glycerine recently - no luck.

Any and all suggestions welcome.

Thanks, PN
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
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My Current Regimen http://www.thisisms.com/forum/regimens-f22/topic25634.html
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civickiller
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Re: Spasticity Drugs: No Luck

Post by civickiller »

pot
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HappyPoet
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Re: Spasticity Drugs: No Luck

Post by HappyPoet »

Where is your spasticity?
Anonymoose
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Re: Spasticity Drugs: No Luck

Post by Anonymoose »

Hi PN,
So sorry nothing is helping your spasticity yet. The suckness of it all. :(

Zinc used to work. Magnesium used to work. Do you think you knocked yourself out of balance in the other direction...over corrected? I think a shortage of any of the electrolytes can cause spasticity and neuro symptoms. I really think you should get a new full panel of nutrient levels and work with a doctor to level them out at an appropriate pace. And then keep testing so you maintain proper levels.

Funny coincidence--I got my mag l threonate this week and gave it a shot. It made my hands hurt. Surprising since it used to help. So I'm avoiding the mag for now. I think I'm on your side of the hill after clonidine (too little adrenal activity...just borderline). I've switched to a multi w low mag and a choline/inositol cap. I just started them yesterday so too early to say of it helps but it certainly hasn't hurt yet.

In the mean time, if I were you, I'd be rather inclined to follow the first suggestion. I smell brownies.
PointsNorth
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Re: Spasticity Drugs: No Luck

Post by PointsNorth »

@all Thanks guys! I smoked some a while back and it worked nicely. Trouble is finding the right strain which I find has been impossible. Also it would be difficult to smoke in the AM in bed when I need something.

FYI-the brownie I ate a view weeks ago did scorched-earth on my brain!!! :confused:

Fyi I find the B12 gives a bit of relief. Picked up my special b12 cocktail yesterday.
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-16
DrG B12 Transdermal Spray 2014-16
Progesterone 2015-16
Low-Dose Immunotherapy 2015-16
My Current Regimen http://www.thisisms.com/forum/regimens-f22/topic25634.html
SLOV8213
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Re: Spasticity Drugs: No Luck

Post by SLOV8213 »

I actually tried this stuff "Sativex" it worked too good. No spasticity, no hyper tension= no standing for me.
PointsNorth
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Re: Spasticity Drugs: No Luck

Post by PointsNorth »

A few people round here have gotten joy from Sativex. I'm not one of them :-(
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-16
DrG B12 Transdermal Spray 2014-16
Progesterone 2015-16
Low-Dose Immunotherapy 2015-16
My Current Regimen http://www.thisisms.com/forum/regimens-f22/topic25634.html
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HappyPoet
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Re: Spasticity Drugs: No Luck

Post by HappyPoet »

If any of your spasticity is in the ribcage or abdomen, you might find helpful information here about the MS Hug. Wishing you the best of luck.
PointsNorth
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Re: Spasticity Drugs: No Luck

Post by PointsNorth »

@Poet no hug.

PN
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-16
DrG B12 Transdermal Spray 2014-16
Progesterone 2015-16
Low-Dose Immunotherapy 2015-16
My Current Regimen http://www.thisisms.com/forum/regimens-f22/topic25634.html
Anonymoose
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Re: Spasticity Drugs: No Luck

Post by Anonymoose »

PN,
I am not familiar with the phrase "scorched-earth on the brain." Is that like frying or toasting your brain? Lol. I don't really enjoy the stuff but would definitely choose being stupid over writhing with spasticity. I've only had mild spasticity and it was awful. It's weird that sativex didn't work. Is that the same as the vaporizer thc?
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blossom
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Re: Spasticity Drugs: No Luck

Post by blossom »

if your potassium levels are out of whack. especially if you have bladder issues good chance it is. i take prescription potassium and try to drink lots of water. it's not perfect but much better than when i don't.
PointsNorth
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Re: Spasticity Drugs: No Luck

Post by PointsNorth »

Thanks Guys,

@moose Smoking has caused no problems but ingesting was a nightmare! Maybe Botox next month.

PN
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-16
DrG B12 Transdermal Spray 2014-16
Progesterone 2015-16
Low-Dose Immunotherapy 2015-16
My Current Regimen http://www.thisisms.com/forum/regimens-f22/topic25634.html
Wonderfulworld
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Re: Spasticity Drugs: No Luck

Post by Wonderfulworld »

A fairly low dose of Clonazepam (Rivotril) at night has been a life-saver for me.

I had rib cage spascticity (MS hug) and some general mild spasticity in my legs. I am sleeping fine, moving much better and getting less fatigued because the effort is so much less.

Maybe worth a try if you have run out of other options?
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
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Re: Spasticity Drugs: No Luck

Post by ljelome »

Hi! i have spasticity too especially on my back n legs and a little on my right hand....

I used rivotril (clonazepam) 1mg/day, it helps a little. But now i consume vitamin B complex, E, and folic acid for two weeks now and i reduce the rivotril's dose to 0,5mg/day for 3 days now. I quitted Rebif since 1 month ago. And now i'm feeling better, stronger, spasticity still persist but not as much as it used to be...

I think less drugs is better for me...i hope u'll find what's the right therapy for u...maybe u could use accupunture or massage too..i found it helpful for me...

thank u.
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jackD
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Re: Spasticity Drugs: No Luck

Post by jackD »

Expert Rev Neurother. 2013 Feb;13(3 Suppl 1):21-5. doi: 10.1586/ern.13.10.

Multiple sclerosis spasticity: 'state-of-the-art' questionnaire survey of specialized healthcare professionals.

Collongues N, Vermersch P.
Source

Neurology Department, Centre Hospitalier Universitaire de Hautepierre, Avenue Molière, 67200 Strasbourg, France. nicolas.collongues@chru-strasbourg.fr.
Abstract

Spasticity (muscle rigidity and spasms) is a frequent and disabling feature of multiple sclerosis (MS), and it can have a marked negative impact on the patient's overall wellbeing and quality of life through a range of symptoms including impaired mobility, bladder dysfunction, stiffness, spasms and sleep disorders. Numerous antispastic agents such as baclofen and tizanidine, as well as others, are available for the management of MS spasticity but, overall, they offer limited clinical benefit.

The current questionnaire survey assessed the epidemiology and management of MS spasticity globally and across the EU, among 157 healthcare professionals (>95% of all respondents were neurologists) attending a large, international MS congress (European Committee for Treatment and Research in Multiple Sclerosis, Lyon, France, 10-13 October 2012).

Survey results showed similarity between the EU and rest-of-world respondents in the epidemiology of MS spasticity, the use of assessment tools to monitor patients, the incidence and severity of symptoms, and management options.

Respondents indicated that approximately 40% of their MS patients had spasticity and it was rated as mild in approximately 40%, moderate in 35% and severe in 25% of patients.

At least 40% of practitioners were dissatisfied with treatment options in their patients with moderate-to-severe MS; this highlights the unmet needs and challenges facing specialists in the management of MS patients with moderate-to-severe spasticity.

PMID:
23369056
[PubMed - in process]
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