Re: I already have leg and trunk muscle stiffness and LDN

[Guest guest]

MsP,

My stiffness was bad to begin with, and as far as I can tell, the LDN hasn't made it worse. It would sure be a relief if it would ease the stiffness, even just a little bit.

Marcie

In a message dated 11/14/2004 1:55:14 PM Central Standard Time, marblejar5@... writes:

My question is will the LDN make my present stiffness (which is pretty

bad) even worse.

ANy comments would be greatly appreciated!

MsP

[Guest guest]

You'll never know until you try.

It's not a great answer but I have some stiffness and some additional

spasms but I just try to adjust to them.

I use an Ex n' flex ef-250 leg exerciser which helps.

Overall I'm getting small improvements since starting.

ADJ

[Guest guest]

LDN helped my trunk muscle spasticity and pain decrease in intensity a good 75%

over 6 months use. My pain was neuropathic pain in my trunk/torso muscles. I

got the stiffness in the calves of my legs but I got in a pool and stood on the

ladder and stretched those calf muscles out daily for many weeks straight. I no

longer experience the calf stiffness. I started on 4.5mg of LDN with Lactose

filler and have stuck with it for 1 year & 5 months. My chronic progressive MS

of 14 straight years was halted dead in its tracks by LDN. I never used the

CRAB's.

[Guest guest]

Hi MsP

I had those same concerns when I was going on LDN. I was so stiff at that time and had so many spasms that I was quite concerned about trying LDN. But I did. It didn't make me any stiffer and my muscle spasms eased up so that I could cut my spasm med in half. Everyone is different, you need to make your own decision to whether you are going to try it or not. It worked for me but I am not you. I have had MS for 27 years.

Good Luck

Marie

----- Original Message -----

From: MsP

low dose naltrexone

Sent: Sunday, November 14, 2004 2:54 PM

Subject: [low dose naltrexone] I already have leg and trunk muscle stiffness and LDN

I have my script but haven't started taking the LDN yet.I have read that a common side effect is muscle stiffness thatpatients didn't have previous to LDN.My question is will the LDN make my present stiffness (which is prettybad) even worse.ANy comments would be greatly appreciated!MsP

[Guest guest]

MsP,

I have PLS, which is always characterised by stiffness and is sometimes

misdiagnosed as Stiffman Syndrome and vice versa. I did notice a little

extra stiffness when I started on 3.0 mg per day but that soon abated

and then I actually found that I was walking (with walking frame) less

stiffly than pre LDN! When I went to 4.5 mg there was no extra

stiffness, although one night as an experiment I tried 6.0 mg and found

it increased my stiffness as much as the 3.0 mg did initially, so I

suspect that it would again soon abate if I stuck with 6.0 mg. However,

I decided it probably wasn't worth doing and returned to 4.5 mg.

MsP wrote:

>

> I have my script but haven't started taking the LDN yet.

> I have read that a common side effect is muscle stiffness that

> patients didn't have previous to LDN.

>

> My question is will the LDN make my present stiffness (which is pretty

> bad) even worse.

>

> ANy comments would be greatly appreciated!

> MsP

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

[Guest guest]

Thanks for sharing this. It is giving me more hope. I have been

taking Avonex since the end of June (when I 'came down' with this).

And I am now getting monthly Solumedrol IV at home. I'm going to

continue this tx for another month. I'm leary of stopping as I am

much better than I was. (I have to keep reminding myself of that)

Good luck to you,

MsP

--- In low dose naltrexone , " Bren " <TwisterAlley2@w...>

wrote:

>

>

>

>

>

>

>

>

>

>

> LDN helped my trunk muscle spasticity and pain decrease in intensity

a good 75% over 6 months use. My pain was neuropathic pain in my

trunk/torso muscles. I got the stiffness in the calves of my legs but

I got in a pool and stood on the ladder and stretched those calf

muscles out daily for many weeks straight. I no longer experience the

calf stiffness. I started on 4.5mg of LDN with Lactose filler and

have stuck with it for 1 year & 5 months. My chronic progressive MS

of 14 straight years was halted dead in its tracks by LDN. I never

used the CRAB's.

>

>

[Guest guest]

>

> Thanks for sharing this. It is giving me more hope. I have been

> taking Avonex since the end of June (when I 'came down' with this).

> And I am now getting monthly Solumedrol IV at home. I'm going to

> continue this tx for another month. I'm leary of stopping as I am

> much better than I was. (I have to keep reminding myself of that)

> Good luck to you,

> MsP

>

---------------

Remember that the LDN may not do near as well until the steroids are out of your

system which could be several months down the road. Sterods and LDN work

against one another.

[Guest guest]

Hi my name is Joanne I was diagnosed with MS at the lahey Clinic Last March 2004. ( although when thinking about this I have been symptomatic for eight years at least.) Since then I was on Steroid IV's for a short time then pretizon for eight months ending in October 2004. Then I started LDN four weeks ago. I have bladder control where there was none, I am walking a bit more around the house, I am thinking more clearly (which is really good as I am a vocational rehabilitation teacher for the state.) I was even able to do some light house work this week. Point is in short please give LDN a try. It is helping me and I am hoping it can help others. JL

-----Original Message-----From: Bren [mailto:TwisterAlley2@...]Sent: Tuesday, November 16, 2004 3:14 PMlow dose naltrexone Subject: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

> > Thanks for sharing this. It is giving me more hope. I have been> taking Avonex since the end of June (when I 'came down' with this). > And I am now getting monthly Solumedrol IV at home. I'm going to> continue this tx for another month. I'm leary of stopping as I am> much better than I was. (I have to keep reminding myself of that)> Good luck to you,> MsP> ---------------Remember that the LDN may not do near as well until the steroids are out of your system which could be several months down the road. Sterods and LDN work against one another.

[Guest guest]

hi joanne,

good on you. i am having the same success. i agree give it a try you have nothing to lose maybe everything to gain.

raelene

-------Original Message-------

From: low dose naltrexone

Date: 11/17/04 08:31:16

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

Hi my name is Joanne I was diagnosed with MS at the lahey Clinic Last March 2004. ( although when thinking about this I have been symptomatic for eight years at least.) Since then I was on Steroid IV's for a short time then pretizon for eight months ending in October 2004. Then I started LDN four weeks ago. I have bladder control where there was none, I am walking a bit more around the house, I am thinking more clearly (which is really good as I am a vocational rehabilitation teacher for the state.) I was even able to do some light house work this week. Point is in short please give LDN a try. It is helping me and I am hoping it can help others. JL

-----Original Message-----From: Bren [mailto:TwisterAlley2@...]Sent: Tuesday, November 16, 2004 3:14 PMlow dose naltrexone Subject: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

> > Thanks for sharing this. It is giving me more hope. I have been> taking Avonex since the end of June (when I 'came down' with this). > And I am now getting monthly Solumedrol IV at home. I'm going to> continue this tx for another month. I'm leary of stopping as I am> much better than I was. (I have to keep reminding myself of that)> Good luck to you,> MsP> ---------------Remember that the LDN may not do near as well until the steroids are out of your system which could be several months down the road. Sterods and LDN work against one another.

[Guest guest]

Thanks Joanne-

I was dx at BIDeaconess(BOS) in June 04. I had been hospitalized

4times with extreme sx's. When I lost use of my legs I had

plasmapheris, and fortunately I got movement back. I was already on

Avonex and was also getting SOlumedrol IV tx's at the time- so it's

very hard to figure out what is working and what is not.

I'm a bit scared to go off the Avonex and solumedrol as I don't want

to do anything that will cause me to lose all movement in my legs.

Seems the LDN will work best on it's own, but I'm not ready to drop

the rest yet.

I will try it in conjuction for now- even if it's not the best tx.

MsP

> Hi my name is Joanne I was diagnosed with MS at the lahey Clinic

Last March

> 2004. ( although when thinking about this I have been symptomatic

for eight

> years at least.) Since then I was on Steroid IV's for a short time then

> pretizon for eight months ending in October 2004. Then I started LDN

four

> weeks ago. I have bladder control where there was none, I am walking

a bit

> more around the house, I am thinking more clearly (which is really

good as

> I am a vocational rehabilitation teacher for the state.) I was even

able to

> do some light house work this week. Point is in short please give

LDN a try.

> It is helping me and I am hoping it can help others. JL

>

>

> -----Original Message-----

> From: Bren [mailto:TwisterAlley2@w...]

> Sent: Tuesday, November 16, 2004 3:14 PM

> low dose naltrexone

> Subject: [low dose naltrexone] Re: I already have leg and trunk muscle

> stiffness and LDN

>

>

>

> --- In low dose naltrexone , " MsP " <marblejar5@h...>

wrote:

> >

> > Thanks for sharing this. It is giving me more hope. I have been

> > taking Avonex since the end of June (when I 'came down' with this).

> > And I am now getting monthly Solumedrol IV at home. I'm going to

> > continue this tx for another month. I'm leary of stopping as I am

> > much better than I was. (I have to keep reminding myself of that)

> > Good luck to you,

> > MsP

> >

>

> ---------------

>

> Remember that the LDN may not do near as well until the steroids

are out

> of your system which could be several months down the road. Sterods

and LDN

> work against one another.

>

>

>

>

>

>

>

[Guest guest]

MsP

I understand if you have something that works don't let it go. I am still using a scooter for any walking at all. I do get around the house with a couple of canes or a walker.

LDN gives me hope and it is the first hope I have had for a very long time. I stopped working as a kindergarten teacher in 2001. I stay home now but I do drive to a friend house for his weekly lessons. I do drive to the store and get the scooter out independently. I struggle into my friends home using a walker he is wheelchair bound, he has MS also and dreams of learning to repair wheelchairs for others. He also wants me to start a home business with him selling incontinent supplies. is 56 a widower and has a dog named cocoa he is nice man!

Take Care MsP I will be thinking good thoughts for you. Have a wonderful day thanks for the response. JL

-----Original Message-----From: MsP [mailto:marblejar5@...]Sent: Tuesday, November 16, 2004 7:00 PMlow dose naltrexone Subject: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDNThanks Joanne-I was dx at BIDeaconess(BOS) in June 04. I had been hospitalized4times with extreme sx's. When I lost use of my legs I hadplasmapheris, and fortunately I got movement back. I was already onAvonex and was also getting SOlumedrol IV tx's at the time- so it'svery hard to figure out what is working and what is not.I'm a bit scared to go off the Avonex and solumedrol as I don't wantto do anything that will cause me to lose all movement in my legs.Seems the LDN will work best on it's own, but I'm not ready to dropthe rest yet.I will try it in conjuction for now- even if it's not the best tx.MsP> Hi my name is Joanne I was diagnosed with MS at the lahey ClinicLast March> 2004. ( although when thinking about this I have been symptomaticfor eight> years at least.) Since then I was on Steroid IV's for a short time then> pretizon for eight months ending in October 2004. Then I started LDNfour> weeks ago. I have bladder control where there was none, I am walkinga bit> more around the house, I am thinking more clearly (which is reallygood as> I am a vocational rehabilitation teacher for the state.) I was evenable to> do some light house work this week. Point is in short please giveLDN a try.> It is helping me and I am hoping it can help others. JL> > > -----Original Message-----> From: Bren [mailto:TwisterAlley2@w...]> Sent: Tuesday, November 16, 2004 3:14 PM> low dose naltrexone > Subject: [low dose naltrexone] Re: I already have leg and trunk muscle> stiffness and LDN> > > > --- In low dose naltrexone , "MsP" <marblejar5@h...>wrote:> >> > Thanks for sharing this. It is giving me more hope. I have been> > taking Avonex since the end of June (when I 'came down' with this).> > And I am now getting monthly Solumedrol IV at home. I'm going to> > continue this tx for another month. I'm leary of stopping as I am> > much better than I was. (I have to keep reminding myself of that)> > Good luck to you,> > MsP> >> > ---------------> > Remember that the LDN may not do near as well until the steroidsare out> of your system which could be several months down the road. Sterodsand LDN> work against one another.> > > > > > >

[Guest guest]

Hi Raelene,How long have you been taking LDN? Would you be willing to share your story with my medical case manager in califoria? JL

-----Original Message-----From: raelene yandell [mailto:bluemoonta@...]Sent: Tuesday, November 16, 2004 5:31 PMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

hi joanne,

good on you. i am having the same success. i agree give it a try you have nothing to lose maybe everything to gain.

raelene

-------Original Message-------

From: low dose naltrexone

Date: 11/17/04 08:31:16

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

Hi my name is Joanne I was diagnosed with MS at the lahey Clinic Last March 2004. ( although when thinking about this I have been symptomatic for eight years at least.) Since then I was on Steroid IV's for a short time then pretizon for eight months ending in October 2004. Then I started LDN four weeks ago. I have bladder control where there was none, I am walking a bit more around the house, I am thinking more clearly (which is really good as I am a vocational rehabilitation teacher for the state.) I was even able to do some light house work this week. Point is in short please give LDN a try. It is helping me and I am hoping it can help others. JL

-----Original Message-----From: Bren [mailto:TwisterAlley2@...]Sent: Tuesday, November 16, 2004 3:14 PMlow dose naltrexone Subject: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

> > Thanks for sharing this. It is giving me more hope. I have been> taking Avonex since the end of June (when I 'came down' with this). > And I am now getting monthly Solumedrol IV at home. I'm going to> continue this tx for another month. I'm leary of stopping as I am> much better than I was. (I have to keep reminding myself of that)> Good luck to you,> MsP> ---------------Remember that the LDN may not do near as well until the steroids are out of your system which could be several months down the road. Sterods and LDN work against one another.

[Guest guest]

http://p220.ezboard.com/fldnlow dose naltrexonefrm8.showMessage?topicID=4.topic is my story about the early days

----- Original Message -----

From: Joanne Longley

low dose naltrexone

Sent: Tuesday, November 16, 2004 19:59

Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

Hi Raelene,How long have you been taking LDN? Would you be willing to share your story with my medical case manager in califoria? JL

[Guest guest]

hi joanne.

i certainly would like that. i live in australia is that a problem? i had a support group lunch today and there was only 5 ladies who could attend, but with that 1 is doing well on betaferon and 2 like me have spms are going to look into ldn. i would like to get as many as i can on this drug. i would hope they can receive the same benefits as me. as we live in rural s.a. there isn't very many but 2 at least is a start. i'm glad to hear you are doing well. i am to and only been taking it not quite 2 weeks and i get better everyday. it is great.

raelene

-------Original Message-------

From: low dose naltrexone

Date: 11/17/04 11:29:15

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

Hi Raelene,How long have you been taking LDN? Would you be willing to share your story with my medical case manager in califoria? JL

-----Original Message-----From: raelene yandell [mailto:bluemoonta@...]Sent: Tuesday, November 16, 2004 5:31 PMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

hi joanne,

good on you. i am having the same success. i agree give it a try you have nothing to lose maybe everything to gain.

raelene

-------Original Message-------

From: low dose naltrexone

Date: 11/17/04 08:31:16

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

Hi my name is Joanne I was diagnosed with MS at the lahey Clinic Last March 2004. ( although when thinking about this I have been symptomatic for eight years at least.) Since then I was on Steroid IV's for a short time then pretizon for eight months ending in October 2004. Then I started LDN four weeks ago. I have bladder control where there was none, I am walking a bit more around the house, I am thinking more clearly (which is really good as I am a vocational rehabilitation teacher for the state.) I was even able to do some light house work this week. Point is in short please give LDN a try. It is helping me and I am hoping it can help others. JL

-----Original Message-----From: Bren [mailto:TwisterAlley2@...]Sent: Tuesday, November 16, 2004 3:14 PMlow dose naltrexone Subject: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

> > Thanks for sharing this. It is giving me more hope. I have been> taking Avonex since the end of June (when I 'came down' with this). > And I am now getting monthly Solumedrol IV at home. I'm going to> continue this tx for another month. I'm leary of stopping as I am> much better than I was. (I have to keep reminding myself of that)> Good luck to you,> MsP> ---------------Remember that the LDN may not do near as well until the steroids are out of your system which could be several months down the road. Sterods and LDN work against one another.

[Guest guest]

Thanks for the reply soo fast yes it is great to finnally get better for me I have been getting worse and worse for just under nine years and always visiting New neurologists wondering why. I have a husband that has endured all this and a son who's Mom had back surgery in 1995 and was never the same again. We have been consumed with getting help I don't talk about the problem it became imposible to hide as I started needing a wheelchair a few years ago before that caines can be hiden and chairs can be placed near doors and every ten feet around rooms. The fight for independance can be strong. But MS usual wins diagnosised or not. As I said before I have hope again called LDN. It is very much worth a try. I have E-mailed my medical case manager to see if it is ok to post her e-mail address. talk soon & thanxs again JL

-----Original Message-----From: raelene yandell [mailto:bluemoonta@...]Sent: Wednesday, November 17, 2004 1:44 AMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

hi joanne.

i certainly would like that. i live in australia is that a problem? i had a support group lunch today and there was only 5 ladies who could attend, but with that 1 is doing well on betaferon and 2 like me have spms are going to look into ldn. i would like to get as many as i can on this drug. i would hope they can receive the same benefits as me. as we live in rural s.a. there isn't very many but 2 at least is a start. i'm glad to hear you are doing well. i am to and only been taking it not quite 2 weeks and i get better everyday. it is great.

raelene

-------Original Message-------

From: low dose naltrexone

Date: 11/17/04 11:29:15

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

Hi Raelene,How long have you been taking LDN? Would you be willing to share your story with my medical case manager in califoria? JL

-----Original Message-----From: raelene yandell [mailto:bluemoonta@...]Sent: Tuesday, November 16, 2004 5:31 PMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

hi joanne,

good on you. i am having the same success. i agree give it a try you have nothing to lose maybe everything to gain.

raelene

-------Original Message-------

From: low dose naltrexone

Date: 11/17/04 08:31:16

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

Hi my name is Joanne I was diagnosed with MS at the lahey Clinic Last March 2004. ( although when thinking about this I have been symptomatic for eight years at least.) Since then I was on Steroid IV's for a short time then pretizon for eight months ending in October 2004. Then I started LDN four weeks ago. I have bladder control where there was none, I am walking a bit more around the house, I am thinking more clearly (which is really good as I am a vocational rehabilitation teacher for the state.) I was even able to do some light house work this week. Point is in short please give LDN a try. It is helping me and I am hoping it can help others. JL

-----Original Message-----From: Bren [mailto:TwisterAlley2@...]Sent: Tuesday, November 16, 2004 3:14 PMlow dose naltrexone Subject: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

> > Thanks for sharing this. It is giving me more hope. I have been> taking Avonex since the end of June (when I 'came down' with this). > And I am now getting monthly Solumedrol IV at home. I'm going to> continue this tx for another month. I'm leary of stopping as I am> much better than I was. (I have to keep reminding myself of that)> Good luck to you,> MsP> ---------------Remember that the LDN may not do near as well until the steroids are out of your system which could be several months down the road. Sterods and LDN work against one another.

[Guest guest]

yes joanne i know how you feel, the same feelings for me i'm afraid. i am hoping the same with ldn, so far everyday is better and i'm smiling again. one of my 13 year old daughters friends said after school tonight "raelene you are smiling again" and people all around are commenting on how well i'm looking at last, it;s been a very very bad year the worst i have ever had. i hope my progression has stopped, i don't think i can go through anymore right now. with the ldn, only 2 weeks , i think i'm getting on track. i hope anyway.

-------Original Message-------

From: low dose naltrexone

Date: 11/17/04 21:50:55

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

Thanks for the reply soo fast yes it is great to finnally get better for me I have been getting worse and worse for just under nine years and always visiting New neurologists wondering why. I have a husband that has endured all this and a son who's Mom had back surgery in 1995 and was never the same again. We have been consumed with getting help I don't talk about the problem it became imposible to hide as I started needing a wheelchair a few years ago before that caines can be hiden and chairs can be placed near doors and every ten feet around rooms. The fight for independance can be strong. But MS usual wins diagnosised or not. As I said before I have hope again called LDN. It is very much worth a try. I have E-mailed my medical case manager to see if it is ok to post her e-mail address. talk soon & thanxs again JL

-----Original Message-----From: raelene yandell [mailto:bluemoonta@...]Sent: Wednesday, November 17, 2004 1:44 AMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

hi joanne.

i certainly would like that. i live in australia is that a problem? i had a support group lunch today and there was only 5 ladies who could attend, but with that 1 is doing well on betaferon and 2 like me have spms are going to look into ldn. i would like to get as many as i can on this drug. i would hope they can receive the same benefits as me. as we live in rural s.a. there isn't very many but 2 at least is a start. i'm glad to hear you are doing well. i am to and only been taking it not quite 2 weeks and i get better everyday. it is great.

raelene

-------Original Message-------

From: low dose naltrexone

Date: 11/17/04 11:29:15

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

Hi Raelene,How long have you been taking LDN? Would you be willing to share your story with my medical case manager in califoria? JL

-----Original Message-----From: raelene yandell [mailto:bluemoonta@...]Sent: Tuesday, November 16, 2004 5:31 PMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

hi joanne,

good on you. i am having the same success. i agree give it a try you have nothing to lose maybe everything to gain.

raelene

-------Original Message-------

From: low dose naltrexone

Date: 11/17/04 08:31:16

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

Hi my name is Joanne I was diagnosed with MS at the lahey Clinic Last March 2004. ( although when thinking about this I have been symptomatic for eight years at least.) Since then I was on Steroid IV's for a short time then pretizon for eight months ending in October 2004. Then I started LDN four weeks ago. I have bladder control where there was none, I am walking a bit more around the house, I am thinking more clearly (which is really good as I am a vocational rehabilitation teacher for the state.) I was even able to do some light house work this week. Point is in short please give LDN a try. It is helping me and I am hoping it can help others. JL

-----Original Message-----From: Bren [mailto:TwisterAlley2@...]Sent: Tuesday, November 16, 2004 3:14 PMlow dose naltrexone Subject: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDN

> > Thanks for sharing this. It is giving me more hope. I have been> taking Avonex since the end of June (when I 'came down' with this). > And I am now getting monthly Solumedrol IV at home. I'm going to> continue this tx for another month. I'm leary of stopping as I am> much better than I was. (I have to keep reminding myself of that)> Good luck to you,> MsP> ---------------Remember that the LDN may not do near as well until the steroids are out of your system which could be several months down the road. Sterods and LDN work against one another.

[Guest guest]

Joanne,

How long has it been since you've had trouble walking? In June I got

progressively worse to the point of needing a walker in the house and

then unable to move my legs at all. After almost a wk my husband

carried me into the car for the 2nd or 3rd hospitalization. We

started Solumedrol and then did 5 courses of plasmapheris(PE). In the

midst of the PE I started to be able to move my legs. I was walking

with a walker and then cane by the time I left the hospital. (PT told

me they thought I would be wheelchair bound). I was already on Avonex

too. So I really can't say if it was the PE or SOlum, or Avonex or

all 3, or time- (I definetly see a change for the worse with my menst

cycle).

I am now using a cane, but can walk around my house with leaning on

walls etc w/o the cane.

But as someone said, you don't realize how much you lose when your not

mobile- until it happens.

Thinking great wishes for you and looking forward to reading about

your progress!

MsP

> > >

> > > Thanks for sharing this. It is giving me more hope. I have

been

> > > taking Avonex since the end of June (when I 'came down' with

this).

> > > And I am now getting monthly Solumedrol IV at home. I'm

going to

> > > continue this tx for another month. I'm leary of stopping

as I am

> > > much better than I was. (I have to keep reminding myself of

that)

> > > Good luck to you,

> > > MsP

> > >

> >

> > ---------------

> >

> > Remember that the LDN may not do near as well until the steroids

> are out

> > of your system which could be several months down the road. Sterods

> and LDN

> > work against one another.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

MsP,

In March of Last year 2004 I could not walk, nor did I have bladder control,my thinking was very mixed up, my typing skills were depleting as dexterity in both hands was going. I had three1/2 hour per day of steroid treatments it sent me into remission for eight weeks. Symptoms started to return.The Doctor proscribed oral steroids. They controlled symptoms but sleeping was problematic. Walking has declined for me over a nine year period. May21th 2004 I got a scooter and I use it to shop. I walk in the house. I exercise daily sometimes three times a day stretching is very important. I eat lowfat whole grain foods, I do not smoke or drink alcohol of any type. A month ago I started LDN, everyday I see new benefits. I had bladder control first of all, now clearer thinking, increased dexterity, I am walking better stronger and longer daily. Hope this answers some of your questions feel free to ask more. Talk again soon! Good Luck, have a wonderful day. Joanne

-----Original Message-----From: MsP [mailto:marblejar5@...]Sent: Wednesday, November 17, 2004 11:27 AMlow dose naltrexone Subject: [low dose naltrexone] Re: I already have leg and trunk muscle stiffness and LDNJoanne,How long has it been since you've had trouble walking? In June I gotprogressively worse to the point of needing a walker in the house andthen unable to move my legs at all. After almost a wk my husbandcarried me into the car for the 2nd or 3rd hospitalization. Westarted Solumedrol and then did 5 courses of plasmapheris(PE). In themidst of the PE I started to be able to move my legs. I was walkingwith a walker and then cane by the time I left the hospital. (PT toldme they thought I would be wheelchair bound). I was already on Avonextoo. So I really can't say if it was the PE or SOlum, or Avonex orall 3, or time- (I definetly see a change for the worse with my menstcycle).I am now using a cane, but can walk around my house with leaning onwalls etc w/o the cane.But as someone said, you don't realize how much you lose when your notmobile- until it happens.Thinking great wishes for you and looking forward to reading aboutyour progress!MsP> > >> > > Thanks for sharing this. It is giving me more hope. I havebeen> > > taking Avonex since the end of June (when I 'came down' withthis).> > > And I am now getting monthly Solumedrol IV at home. I'mgoing to> > > continue this tx for another month. I'm leary of stoppingas I am> > > much better than I was. (I have to keep reminding myself ofthat)> > > Good luck to you,> > > MsP> > >> >> > ---------------> >> > Remember that the LDN may not do near as well until the steroids> are out> > of your system which could be several months down the road. Sterods> and LDN> > work against one another.> >> > > >> >> >> >> >