Teleconference on Spasticity

[Lulu54]

I can't do this one tonight so maybe someone else here can listen in and share their news?  This is sponsored by NMSS.

New Spasticity Teleconference has arrived!
Tonight, Monday, May 2, 8-9PMET



Topic: “Spasticity and MS”

Speaker: Patricia Nance, MD
                VA Long Beach Healthcare System
                Long Beach, CA

Date:  Monday,  May 2 , 2011

Time:  8:00PM - 9:00PM, ET
          
Don't think you have spasticity?  You may be surprised.  This call will open your eyes about the subject of Spasticity.

Dr. Nance has an interesting approach to setting goals and measuring progress in the treatment of Spasticity. You will find this teleconference very informative.

To register, simply click here to RSVP.  You will receive a reminder before this teleconference.

If it's close to the beginning of the 8PMET call, please dial-in as follows :
Phone: 1  8 66   .295.5950
Access Code: 2193353#.

If you have any questions for Dr. Nance regarding Spasticity, please send them to ***@**** either before or during the live teleconference.

[addicted2harleys]

I got it, Mary.  Thanks for bumping it.  Yes, this is encouraging for me.  I hope I get included in with the people that had life changing experiences with the pump.  

Hopefully I will remember to go check out the transcript when it gets posted.  

Hugs,
Addi

[Lulu54]

thanks for that bump, Mary.  I know spasticity is a topic of interest right now.

[twopack]

bump

[Lulu54]

thanks Mary, great job being the cub reporter.  I appreciated reading your notes.  As for the pump, they just talked about that on Saturday and the neuro & NP both said the patients who have them implanted have made amazing changes in their lives.  He wanted everyone to be aware that this technology is available.

-Lu

[Wobbly]

good info... but I still get confused as to spasms and spastcity, to me pain is pain and I'm not sure which is which.. Or how to describe the pain or whatever it is?  Deep muscle pain is ?  Jerking arms and legs (no pain) what's that?

sorry just going on and on today
wobbly

[sllowe]

Thanks, Ladies!
I'm definitely going to keep this fresh in my mind for my next appt. Having increasing spasms, in varying places, and don't want to go back on the baclofen. Would prefer to have something to take now and again.

Thank you so much for re-capping this conference. Hope more people tune into what's been said. I'll be pulling up the transcripts for sure.

-Shell

[twopack]

I was #234 to join the seminar via phone.

As I tuned in Dr. Nance was making a closing point about how pain contributes to spasticity.  The moderator broke in with a question and she responded that answers are really complicated because MS can affect any part of the CNS.

She discussed treatments for spasticity, mentioning that either cold or mild heat may help.  She said cold inhibits (and therefore slows pain signals) but if it also inhibits an inhibitory signal the end result is excitement (more spasm).  OK, I can see it IS indeed complicated.

A discussion of chemical treatments came next.  Drugs specifically highlighted were Dantrolene (a good choice for those with liver disease but doesn't cross BBB),
Baclofen (always remember to wean off by decreasing by 1/2 tab per day),
Benzodiazepines (not used much),
Zanaflex / tizanidine (initially more sedating but also gives more pain relief, can lower BP, and can cause hallucination like effects as you enter into sleep),
gabapentin (not metabolized at all so also good for people with liver disease) and
Periactin (a good choice for those who also need to gain weight).

There was a specific discussion of botulism injections.  These are used mainly when there are specific problem areas.  One example was spasms that cause the knees to lock together and make hygiene or self-cathing difficult.  The effect can wear off in months or last a long time.  It depends on how rapidly new nerve cells sprout.  I found it interesting that dosage of botulism toxin is measured in "mouse units".

There was a fairly lengthy section on the Baclofen pump.  Baclofen is used because it passes through the BBB.  Intrathecal use by-passes the cumbersome routing through the blood stream.  These factors combine to allow smaller effective doses.  Dose is titrated up (using microgram rather than milligram dosage) until an effective dose is found.  That dose usually lasts for a long time.  BTW, 1mg=1000 micrograms

Candidates for the pump are people who have had a significant decrease in their quality of life, are willing to make the commitment necessary for surgery and maintenance of the pump and have access to a reliable resource for refill of the pump.

As in past seminars, exercise (regular stretching) of joints and limbs was stressed as an important aspect in prevention and treatment of spasticity.

She stressed it is necessary to have a TEAM approach to treating spasticity, giving an example of people consulting her who are on three different drugs to counter spasticity and can barely stay awake yet continue to have occasional spasms.  She says you need to know your goal and work toward it.

Alan Mandell of the MSWorld website broke in at the end and stated every person he has known that has had the pump implanted has had their life transformed.

Mr. Mandell also informed us that a transcript of this seminar will be available on the MSWorld website NLT May 17, 2011.  I'll be eager to go back and read the part I missed before tuning in late.

[Lulu54]

good.  maybe you'll have some tips for us.  thanks.

[twopack]

late but listening