Spasticity Drugs: No Luck

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Spasticity Drugs: No Luck

Postby PointsNorth » Thu Mar 21, 2013 9:44 pm

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
Coimbra Protocol 2014-
PointsNorth
Family Elder
 
Posts: 529
Joined: Mon Sep 04, 2006 2:00 pm
Location: LeftCoast Canada

Advertisement

Re: Spasticity Drugs: No Luck

Postby civickiller » Fri Mar 22, 2013 1:55 am

pot
User avatar
civickiller
Family Elder
 
Posts: 557
Joined: Thu Feb 04, 2010 3:00 pm
Location: Hawaii

Re: Spasticity Drugs: No Luck

Postby HappyPoet » Fri Mar 22, 2013 5:14 am

Where is your spasticity?
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 2:00 pm

Re: Spasticity Drugs: No Luck

Postby Anonymoose » Fri Mar 22, 2013 6:44 am

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.
Anonymoose
Family Elder
 
Posts: 1046
Joined: Tue Oct 09, 2012 6:33 am

Re: Spasticity Drugs: No Luck

Postby PointsNorth » Fri Mar 22, 2013 10:58 am

@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-
PointsNorth
Family Elder
 
Posts: 529
Joined: Mon Sep 04, 2006 2:00 pm
Location: LeftCoast Canada

Re: Spasticity Drugs: No Luck

Postby SLOV8213 » Fri Mar 22, 2013 11:55 am

I actually tried this stuff "Sativex" it worked too good. No spasticity, no hyper tension= no standing for me.
SLOV8213
Family Member
 
Posts: 81
Joined: Sat Sep 29, 2012 5:01 pm

Re: Spasticity Drugs: No Luck

Postby PointsNorth » Fri Mar 22, 2013 12:00 pm

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-
PointsNorth
Family Elder
 
Posts: 529
Joined: Mon Sep 04, 2006 2:00 pm
Location: LeftCoast Canada

Re: Spasticity Drugs: No Luck

Postby HappyPoet » Fri Mar 22, 2013 2:49 pm

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.
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 2:00 pm

Re: Spasticity Drugs: No Luck

Postby PointsNorth » Fri Mar 22, 2013 4:30 pm

@Poet no hug.

PN
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-
PointsNorth
Family Elder
 
Posts: 529
Joined: Mon Sep 04, 2006 2:00 pm
Location: LeftCoast Canada

Re: Spasticity Drugs: No Luck

Postby Anonymoose » Fri Mar 22, 2013 4:41 pm

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?
Anonymoose
Family Elder
 
Posts: 1046
Joined: Tue Oct 09, 2012 6:33 am

Re: Spasticity Drugs: No Luck

Postby blossom » Fri Mar 22, 2013 5:42 pm

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.
User avatar
blossom
Family Elder
 
Posts: 1377
Joined: Thu Dec 03, 2009 3:00 pm
Location: south western pa.

Re: Spasticity Drugs: No Luck

Postby PointsNorth » Sat Mar 23, 2013 2:50 pm

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-
PointsNorth
Family Elder
 
Posts: 529
Joined: Mon Sep 04, 2006 2:00 pm
Location: LeftCoast Canada

Re: Spasticity Drugs: No Luck

Postby Wonderfulworld » Sun Mar 24, 2013 1:21 pm

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
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
Wonderfulworld
Family Elder
 
Posts: 773
Joined: Sun Aug 27, 2006 2:00 pm
Location: Ireland

Re: Spasticity Drugs: No Luck

Postby ljelome » Sun Mar 24, 2013 9:43 pm

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.
linda
ljelome
Family Elder
 
Posts: 126
Joined: Fri Jan 25, 2013 8:46 pm
Location: Jakarta, Indonesia

Re: Spasticity Drugs: No Luck

Postby jackD » Mon Mar 25, 2013 7:08 pm

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]
User avatar
jackD
Family Elder
 
Posts: 335
Joined: Wed May 24, 2006 2:00 pm
Location: Near Wash DC

Next

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service