Re: Is it working for you???????

[Guest guest]

Janet,

Have you not been reading the posts on this forum?

I question sure, but the positives compel me to keep going.

OK have only just started (7 days), but Rome was not built in a day and what else looks as promising?

Just my feelings,

XGRAF

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

From: mscrzy68

low dose naltrexone

Sent: Monday, July 05, 2004 8:39 AM

Subject: [low dose naltrexone] Is it working for you???????

I need to hear some positive tories to renew my faith in LDN. Has anyone had an MRI since starting the LDN?? Curious, Janet

[Guest guest]

I have not had an MRI in several years, and don't intend to... I have never had an MRI that in any way correlated with my symptoms or their severity. I question their value as an indicator of the status of our battle with MS.

But with LDN I have a happy bladder. For the thirteen dollars a month that it costs that alone is well worth it. After five months on LDN (today is my five month anniversary) I can't yet judge whether I'm really improving. Some things are better, some are the same, none are really worse. The things that seem to be worse, for example the pains in my feet, knees, and hips, are probably not new. I had so little sensation in those areas for so long for all I know they've been complaining for ages and not getting the message through. The message now is loud and clear: lose 25 pounds, please!

My hope with LDN is more long term. I want to avoid progression, and I'm hoping that by interrupting the disease process, whatever that really is, my body will be able to slowly effect some repairs. So that is a long term goal, one to be held in the back of my mind and not fussed over every day. An occasional review of where I'm at is all that is necessary, like every six months or so. In the meantime, my bladder no longer shrieks for attention at inopportune times, my dependence on Depends is far less, I can feel my skin (unfortunately that means I can also feel my sunburn) and I'm not any worse than I was after whatever knocked me on my backside right after I started the LDN.

I am more aware of some of the signs of aging, now that I am "in touch" with my body again. There have been a lot of changes since I lost so much sensation several years ago. Like I said, I doubt my aches and pains are new... But those things are not to be confused with MS damage. Loss of muscle tone as a result of not feeling good enough to be active is a second hand result of MS, not a primary symptom. Extra body fat is in the same category. Sleeping less is fairly normal for my age. It's too easy to blame everything on MS, which makes it also too easy to discount what LDN is doing for us. LDN or not, our bodies change with age. Perhaps with LDN we have a better chance of maintaining a healthier body, perhaps even healthy enough to provide a platform for healing some of our damaged nerves...

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

From: Tomasta

low dose naltrexone

Sent: Monday, July 05, 2004 12:44 PM

Subject: Re: [low dose naltrexone] Is it working for you???????

Janet,

Have you not been reading the posts on this forum?

I question sure, but the positives compel me to keep going.

OK have only just started (7 days), but Rome was not built in a day and what else looks as promising?

Just my feelings,

XGRAF

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

From: mscrzy68

low dose naltrexone

Sent: Monday, July 05, 2004 8:39 AM

Subject: [low dose naltrexone] Is it working for you???????

I need to hear some positive tories to renew my faith in LDN. Has anyone had an MRI since starting the LDN?? Curious, Janet

[Guest guest]

You are so right in all of that . I too have had all the improvements and found a few new limitations only cause now I can finally push my self farther than before, and I find out that while I was happily regressing with my M.S. now I am not quite so happy to remain on this downhill slide.

I do a single situp and then ask is this all?I used to do twenty a night six years ago,but now just getting up off the floor is a battle so I will now try to increase this number from one to two and then well the sky is the limit.

At least now I feel like trying!Before LDN. I didn't have the energy to try.

Reg.

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

From: low dose naltrexone

Date: 07/05/04 14:11:28

low dose naltrexone

Subject: Re: [low dose naltrexone] Is it working for you???????

I have not had an MRI in several years, and don't intend to... I have never had an MRI that in any way correlated with my symptoms or their severity. I question their value as an indicator of the status of our battle with MS.

But with LDN I have a happy bladder. For the thirteen dollars a month that it costs that alone is well worth it. After five months on LDN (today is my five month anniversary) I can't yet judge whether I'm really improving. Some things are better, some are the same, none are really worse. The things that seem to be worse, for example the pains in my feet, knees, and hips, are probably not new. I had so little sensation in those areas for so long for all I know they've been complaining for ages and not getting the message through. The message now is loud and clear: lose 25 pounds, please!

My hope with LDN is more long term. I want to avoid progression, and I'm hoping that by interrupting the disease process, whatever that really is, my body will be able to slowly effect some repairs. So that is a long term goal, one to be held in the back of my mind and not fussed over every day. An occasional review of where I'm at is all that is necessary, like every six months or so. In the meantime, my bladder no longer shrieks for attention at inopportune times, my dependence on Depends is far less, I can feel my skin (unfortunately that means I can also feel my sunburn) and I'm not any worse than I was after whatever knocked me on my backside right after I started the LDN.

I am more aware of some of the signs of aging, now that I am "in touch" with my body again. There have been a lot of changes since I lost so much sensation several years ago. Like I said, I doubt my aches and pains are new... But those things are not to be confused with MS damage. Loss of muscle tone as a result of not feeling good enough to be active is a second hand result of MS, not a primary symptom. Extra body fat is in the same category. Sleeping less is fairly normal for my age. It's too easy to blame everything on MS, which makes it also too easy to discount what LDN is doing for us. LDN or not, our bodies change with age. Perhaps with LDN we have a better chance of maintaining a healthier body, perhaps even healthy enough to provide a platform for healing some of our damaged nerves...

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

From: Tomasta

low dose naltrexone

Sent: Monday, July 05, 2004 12:44 PM

Subject: Re: [low dose naltrexone] Is it working for you???????

Janet,

Have you not been reading the posts on this forum?

I question sure, but the positives compel me to keep going.

OK have only just started (7 days), but Rome was not built in a day and what else looks as promising?

Just my feelings,

XGRAF

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

From: mscrzy68

low dose naltrexone

Sent: Monday, July 05, 2004 8:39 AM

Subject: [low dose naltrexone] Is it working for you???????

I need to hear some positive tories to renew my faith in LDN. Has anyone had an MRI since starting the LDN?? Curious, Janet

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

I have never heard that LDN was a 100% cure. I have heard that it may halt the progression, as it has in many people. If it gives any relief, then that's more than any of the ABCRs did for me.

I feel compelled to say something since I was visiting with a woman who knows 3 other women with RRMS. These 3 women just can't understand that the son of the woman who they were visiting with and myself are in constant pain. They even question whether or not we have MS since they have no pain. Apparently there is no comparison in RRMS & PPMS. Actually, the diagnosis means NOTHING to me since there is nothing that traditional medicine is willing to do that might actually help. People with RRMS better hope that their status doesn't change to PPMS because there is a world of difference! Not trying to put fear in anyone. Just be aware that LDN is the only hope to halt progression at the time.

Texas Tech University is doing a study into the genetic and environmental components in MS. We all know how long these things can take. It probably won't help me in any way, but maybe it will help the next generation.

Marcie (PPMS)

In a message dated 7/29/2004 10:48:23 PM Central Standard Time, drewdanner@... writes:

My wife has been on LDN since Feb '04 and just had MRI's in late June. She is also on Copaxone since Nov '03 and was on Betaseron for 8 months prior to that. The latest MRI shows no new active lesions but I must add that she has had 2 exacerbations since late April that required IV steroids. The LDN has helped her leg pain and fatigue but it's not a 100% cure.

[Guest guest]

Hi Jerzy, I think that 9mgs is way too much. It may block the endorphin production too long. Dr. B has put only 2 of his hundreds of patients on 6mg. I would try 6mgs before jumping to 9 for now. I was on Rebif for 1 -1/2 yrs. I believe it has taken at least a year to leave my system. Been on LDN over a year and on 6mgs for 8 months and have remained stable. Pour some out of the 4.5 and take with a whole to make 6mgs. This way you will know what to order next if on the 6mgs you feel good . Kiki

[Guest guest]

Hi Marcie, I was always in pain. My hips, my skin coud not be touched in certain places,my lower back. I could not sleep at all. (8 yrs) Did not know I had MS. They kept telling me it was sciatica, fibromialgia, herniated discs, blablabla. I was researching it when I found some article mentioned a chiropractic maneuver that helped MS. I thought , no way was anyone cracking my bones! Kept digging and found one method of chiropractic called NUCCA that was very gentle , and works wonders. There were only 3 docs in all of NY state. I called the closest one , over an hour away, and talked on the phone for a very long time. Made an appt. and went. Unbelievable!! He x-rayed from the top of my head-down, this way you see how crooked my head was sitting on the atlas blocking nerve passage. He gently, and I mean gently , did the maneuver and immediately, my hips stopped hurting, my legs were now the same leghth,my back stopped hurting too. I now know when I hurt, my spine is out of alignment . The doc has since moved closer and I go once a month and insurance covers most of it. I recommended about 10 people to this method and most do not need to go back after 2 maneuvers( They did not have MS, only low back pain) Look into this , method, it is so gentle and so effective. I even took my son who is 13, because he was complaining his back hurt. The doc asked if he ever fell on his head because he was off by 7degrees. We remembered the previous year he had hit his head diving into a pool and the emergency room said he was fine except for a bump and scrape. After 3 visits, never complained again, he is now 15. Sorry this is so long, but I hope it will help. Kiki

[Guest guest]

Jerzy,

Hey! There are several of us taking 6mg doses of LDN. Personally, I believe it is good for me. I decided on my own to try it. Kiki is taking 6mg per Dr Bahari's advice. I know that my doc will write my script for 6mg when I need him to. My improvements are significant enough to warrant this increase.

Marcie (PPMS)

In a message dated 7/30/2004 8:49:31 AM Central Standard Time, japiotrowski@... writes:

Has any one of you tried something like that - a self-ordered higher

dose of LDN?

I would appreciate your comments.

Jerzy

[Guest guest]

Reg,

I should clarify! My pain is a constant burning sensation in my feet and lower legs. I think it is referred to as Neuropathy. Sometimes the muscle spasms are painful as they cause my legs to twist inward. I guess this would be the atrophy that I'm fighting by trying to pull myself up to a standing postion as often as possible but usually for only 30 - 40 seconds at a time. It's very hard work!!

Marcie (PPMS)

In a message dated 7/30/2004 11:13:23 AM Central Standard Time, regkreil@... writes:

You are getting me to wonder now Marcie,

You say that you are in constant pain, right? Also you say you have PPMS.right?

I was told that my brother has PPMS and I have SPMS and neither of us has any extra pain other than normal.

I have asked him on many occasions "Do you hurt anywhere?" And he always says "no" with a grin.

Only my neck hurts right now cause I fell down a week ago and cranked my neck around but good.

As far as muscle pains that I have read about, we don't have them

[Guest guest]

I have been experimenting with LDN for almost a year now. I started

with 4.5mg. I did not notice any changes whatsoever. Neither positive

nor negative. Not even the side effects which some of you talk about

(insomnia, stiffness, etc.). I got discouraged, an stopped taking it.

Then I tried cord blod stem cell infusion terapy in Mexico, but did

not notice any improvement after 6 months either. I thought that maybe

I am just a completely immune, or maybe in my MS condition I should

say resistant bastard to all medication (prior to all of that I was on

Rebif for more than a year). Recently, I felt quite miserable and I

decided to give LDN one more try, and I " administered " to myself a

double dose of it (two tablets, i.e. 9mg). After three days, although

none of my symptoms improved, I generally feel better, but then again

it may be a " spontaneous remission " bla, bla, bla.

Has any one of you tried something like that - a self-ordered higher

dose of LDN?

I would appreciate your comments.

Jerzy

[Guest guest]

You are getting me to wonder now Marcie,

You say that you are in constant pain, right? Also you say you have PPMS.right?

I was told that my brother has PPMS and I have SPMS and neither of us has any extra pain other than normal.

I have asked him on many occasions "Do you hurt anywhere?" And he always says "no" with a grin.

Only my neck hurts right now cause I fell down a week ago and cranked my neck around but good.

As far as muscle pains that I have read about, we don't have them.Now of course that's just us two guys-oh and my friend Dale who never complains about pain either.and he is most definitely SPMS for longer than me.

Sure have a stiff neck through accidental happenings.(and by the way I bought a Homemedics Shiatzu Massager off E-Bay and it works great on my neck)

So I still think M.S. can affect anyone in a lot of different ways.

(just trying to unscare you all)

Reg.

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

From: low dose naltrexone

Date: 07/30/04 07:34:58

low dose naltrexone

Subject: Re: [low dose naltrexone] Re: Is it working for you???????

I have never heard that LDN was a 100% cure. I have heard that it may halt the progression, as it has in many people. If it gives any relief, then that's more than any of the ABCRs did for me. I feel compelled to say something since I was visiting with a woman who knows 3 other women with RRMS. These 3 women just can't understand that the son of the woman who they were visiting with and myself are in constant pain. They even question whether or not we have MS since they have no pain. Apparently there is no comparison in RRMS & PPMS. Actually, the diagnosis means NOTHING to me since there is nothing that traditional medicine is willing to do that might actually help. People with RRMS better hope that their status doesn't change to PPMS because there is a world of difference! Not trying to put fear in anyone. Just be aware that LDN is the only hope to halt progression at the time. Texas Tech University is doing a study into the genetic and environmental components in MS. We all know how long these things can take. It probably won't help me in any way, but maybe it will help the next generation. Marcie (PPMS) I

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thanks for spelling that out for me Marcie

I had that and called it a "badly scalded feeling" on my left arm and leg. The Drs. couldn't do a thing for it except laughingly say smoke a joint.

Fortunately the LDN cured that on the fourth day. Now it's only slightly numb but I can handle that!

I guess I should be grateful that the spasms I get are only like a really long and intense stretch. But I could and have fallen down during them,they can come on at any time while trying to walk.

Reg.

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

From: low dose naltrexone

Date: 07/30/04 11:53:19

low dose naltrexone

Subject: Re: [low dose naltrexone] Re: Is it working for you???????

Reg, I should clarify! My pain is a constant burning sensation in my feet and lower legs. I think it is referred to as Neuropathy. Sometimes the muscle spasms are painful as they cause my legs to twist inward. I guess this would be the atrophy that I'm fighting by trying to pull myself up to a standing postion as often as possible but usually for only 30 - 40 seconds at a time. It's very hard work!! Marcie (PPMS) In a message dated 7/30/2004 11:13:23 AM Central Standard Time, regkreil@... writes:

You are getting me to wonder now Marcie, You say that you are in constant pain, right? Also you say you have PPMS.right? I was told that my brother has PPMS and I have SPMS and neither of us has any extra pain other than normal. I have asked him on many occasions "Do you hurt anywhere?" And he always says "no" with a grin. Only my neck hurts right now cause I fell down a week ago and cranked my neck around but good. As far as muscle pains that I have read about, we don't have them

____________________________________________________ IncrediMail - Email has finally evolved - Click Here