[MSacorn]

It's been such a crazy week, I forgot to tell you all how my neuro visit went.

My docs new PA is great. She is very good too.

I'd been wanting to try LDN because I'm looking for a silver lining, always. My doc she said, she wouldn't write a script and no local docs would either. It is unsubstantiated and no papers have been published.

I got her to agree to try Namenda. It's a alzheimer med. It starts with a 4 week titration pack. I'll be starting on Sunday. I'm hoping for some relief. I had seen a pain doc in Colorado who had found it had helped a couple of his MS patients. My neuro out there said no.

Is anyone else taking Namenda?

She also refered me to OT to get some help hopefully for my hands. I curl my hands and wrists in as I sleep and wake with much pain and stiffness.

I went yesterday and they made a splint to fit the bottom of my forearm to just below my fingers. It velcros over the top 3 places. I tried it last night and my wrist is better, but my fingers are still sore. It needed padding around my thumb and I found some from my walking cast to try. It helped.

I go back Tuesday. I had a temp OT because my regular one was out this week. He tested my hand and finger strength which was near normal. I'm like, I can do things it just hurts like crazy to touch anything. But it was good to know.

[AZjanie]

I have hand/wrist splints to use at bedtime too as I curl my fingers into fists. Must be a "flashback" of living with my abusive first husband!

Now I am ready to fight but no one to fight with. Booger is too nice and we don't fight.

I was waking in the mornings or after a nap with my hands hurting and fingers burning too. Wierd

[DM]

Hi Beth! Thanks for the update. Hope the splint helps. Do you only have it for one hand? My DH has them for his hands b/c he curls his under too, but he seldon puts them on. (he should tho)

I haven't heard of Namenda, so will have to look it up. Hope it helps.

take care Beth!


.

[lady_express_44]

I used to have a claw hand at all times, and contort my limbs in weird positions at night (causing pain during the daytime) as well. I used braces for a couple of years. LDN has mostly taken care of that for me, except when I had one flare.

The American Academy of Neurology is having their Annual Meeting on Apr 123 - 19th, and the results from the LDN trials will be presented. Perhaps your doc might be more convinced then:
______________________

[P02.151] A Single Center, Randomized, Placebo-Controlled, Double-Crossover Study of the Effects of Low Dose Naltrexone on Multiple Sclerosis Quality of Life

Bruce Cree, Michael Ross, Ivo Violich, Brendan Berry, Azadeh Beheshtian, Elena Kornyeyeva, Douglas Goodin, San Francisco, CA

OBJECTIVE: To assess the efficacy of low dose naltrexone (LDN, 4.5mg) versus placebo on the Multiple Sclerosis Quality of Life Inventory (MSQOL54) and visual analog scale (VAS) in subjects with multiple sclerosis (MS). BACKGROUND: Anecdotal reports from some MS patients suggest that LDN may improve their quality of life. There are no published studies of LDN in MS. DESIGN/METHODS: This is a single-center, randomized, double-masked, placebo-control, cross-over trial to assess the efficacy LDN on MS patients quality of life. Subjects with MS between 18 and 75 years of age, taking glatiramer acetate, interferon beta, or no disease modifying treatment were enrolled in the study. Subjects were randomized to either 4.5 mg LDN or placebo nightly for 8 weeks. Following a one week wash out, subjects were switched to the alternate study drug for an additional 8 weeks. All subjects were evaluated using the MSQOL54 questionnaire and VAS at baseline and at weeks 8 and 17. RESULTS: 89 patients were randomized. 57 women with mean age of 49.1 years and 32 men with mean age of 47.8 years participated. 49 relapsing remitting, 16 secondary progressive, 23 primary progressive, and 1 progressive relapsing MS subjects enrolled. 16 subjects were on glatiramer acetate, 23 on interferon beta and 50 subjects were not on disease modifying therapies. 73 patients will complete the study by November 8th, 2007. 15 subjects voluntarily withdrew. 1 subject withdrew due to an unrelated medical condition. No subjects were withdrawn due to adverse events attributable to study drug. The efficacy of LDN versus placebo on the subscales of the MSQOL54 and the VAS will be presented. In addition, interactions between LDN and interferon beta or glatiramer acetate will be assessed. CONCLUSIONS/RELEVANCE: This study will establish LDNs safety and efficacy on MS quality of life. Supported by: Gifts from private donors.
Category - MS and Related Diseases
SubCategory - Clinical Science

Tuesday, April 15, 2008 11:30 AM

Poster Sessions II: Multiple Sclerosis and Related Diseases: Therapeutics (11:30 AM-2:30 PM)
_________________________________

[P02.151] A Single Center, Randomized, Placebo-Controlled, Double-Crossover Study of the Effects of Low Dose Naltrexone on Multiple Sclerosis Quality of Life

Bruce Cree, Michael Ross, Ivo Violich, Brendan Berry, Azadeh Beheshtian, Elena Kornyeyeva, Douglas Goodin, San Francisco, CA

OBJECTIVE: To assess the efficacy of low dose naltrexone (LDN, 4.5mg) versus placebo on the Multiple Sclerosis Quality of Life Inventory (MSQOL54) and visual analog scale (VAS) in subjects with multiple sclerosis (MS). BACKGROUND: Anecdotal reports from some MS patients suggest that LDN may improve their quality of life. There are no published studies of LDN in MS. DESIGN/METHODS: This is a single-center, randomized, double-masked, placebo-control, cross-over trial to assess the efficacy LDN on MS patients quality of life. Subjects with MS between 18 and 75 years of age, taking glatiramer acetate, interferon beta, or no disease modifying treatment were enrolled in the study. Subjects were randomized to either 4.5 mg LDN or placebo nightly for 8 weeks. Following a one week wash out, subjects were switched to the alternate study drug for an additional 8 weeks. All subjects were evaluated using the MSQOL54 questionnaire and VAS at baseline and at weeks 8 and 17. RESULTS: 89 patients were randomized. 57 women with mean age of 49.1 years and 32 men with mean age of 47.8 years participated. 49 relapsing remitting, 16 secondary progressive, 23 primary progressive, and 1 progressive relapsing MS subjects enrolled. 16 subjects were on glatiramer acetate, 23 on interferon beta and 50 subjects were not on disease modifying therapies. 73 patients will complete the study by November 8th, 2007. 15 subjects voluntarily withdrew. 1 subject withdrew due to an unrelated medical condition. No subjects were withdrawn due to adverse events attributable to study drug. The efficacy of LDN versus placebo on the subscales of the MSQOL54 and the VAS will be presented. In addition, interactions between LDN and interferon beta or glatiramer acetate will be assessed. CONCLUSIONS/RELEVANCE: This study will establish LDNs safety and efficacy on MS quality of life. Supported by: Gifts from private donors.
Category - MS and Related Diseases
SubCategory - Clinical Science

Tuesday, April 15, 2008 11:30 AM

Poster Sessions II: Multiple Sclerosis and Related Diseases: Therapeutics (11:30 AM-2:30 PM)
________________________

http://www.abstracts2view.com/aan200...04-15&expand=1

There are MANY doctors, neuros, MS specialists, MS Clinics and research centers that are rxing LDN now . . .

Cherie

[MSacorn]

Originally Posted by daisymay

Hi Beth! Thanks for the update. Hope the splint helps. Do you only have it for one hand? My DH has them for his hands b/c he curls his under too, but he seldon puts them on. (he should tho)

I haven't heard of Namenda, so will have to look it up. Hope it helps.

take care Beth!


.

Tell DH if he has them, he should wear them. Can't you stomp your feet, or has he become immune to that?

I'll let you know if if helps. I'm a bit cautious because I've been know to have the rarer side effects of meds. We shall see. Fingers crossed.

[DM]

Originally Posted by MSacorn

Tell DH if he has them, he should wear them. Can't you stomp your feet, or has he become immune to that?

I'll let you know if if helps. I'm a bit cautious because I've been know to have the rarer side effects of meds. We shall see. Fingers crossed.

MWAH?? Stomping my lil ole feet?? HA!

You've been peeking Beth!!!

[SallyC]

Hi Beth. Sorry about the hand/finger thingy. Mine try to do that too but so far it hasn't been a problem,

Too bad about your Doc and LDN...that's Ohio for you...pfft!! My LDN Doc is an, outside the box thinker, MD, in Pennsylvania. I do a every four month phone appt with him and he prescribes my LDN for 4 months at a time.

If you want his number, I'll PM it to you and you can give him a call to make an appt. My PCP knows I am on it and where I get it. He prefers it that way, since he doesn't know too much about it.

Good luck with your brace. I hope it helps.

[MSacorn]

Originally Posted by SallyC

Hi Beth. Sorry about the hand/finger thingy. Mine try to do that too but so far it hasn't been a problem,

Too bad about your Doc and LDN...that's Ohio for you...pfft!! My LDN Doc is an, outside the box thinker, MD, in Pennsylvania. I do a every four month phone appt with him and he prescribes my LDN for 4 months at a time.

If you want his number, I'll PM it to you and you can give him a call to make an appt. My PCP knows I am on it and where I get it. He prefers it that way, since he doesn't know too much about it.

Good luck with your brace. I hope it helps.

Sally
Lucky you. I'm going to hold off on getting your doc info. And since, you can travel all that way, I've got no excuse not to try, I'll let you know. I'm going to try the Namenda first. SInce I have it already.

[MSacorn]

Originally Posted by daisymay

MWAH?? Stomping my lil ole feet?? HA!

You've been peeking Beth!!!

Who me?

[SallyC]

Originally Posted by MSacorn

Sally
Lucky you. I'm going to hold off on getting your doc info. And since, you can travel all that way, I've got no excuse not to try, I'll let you know. I'm going to try the Namenda first. SInce I have it already.

I don't travel there. I have phone appts only with him. I do report my PCP stats with him though. General health..BP..etc... He faxes my script to Skips and they send it out to me.