Re: Flair up after 7 weeks on LDN

[Guest guest]

GO BLESS, WILL SAY A PRAYER FOR YOU. I'VE BEEN ON LDN FOR GOING ON 9 WEEKS AND NO REMARKABLE IMPROVEMENTS EXCEPT BLADDER CONTROL. EVERYONE'S BODY WORKS DIFFERENTLY. DON'T GIVE UP. KIM R.

[Guest guest]

Lenny,

I sure don't like hearing that you might throw in the towel so soon! Do you think this may be one of the psuedo-exacerbations that have been discussed lately? I just don't want anyone else to end up where I'm at if it can be helped! When one gets to a complete stand-still, it's easier to think straight. I understand the desperation in trying anything to keep from getting to that point. Do what you feel led to do, just don't let someone else do the leading!!

Marcie (PPMS)

[Guest guest]

> My left leg from the hip down has gone numb and weak this morning. I know

> from past experience what this means. Called my doctor this a.m. to start

> solumedrol (not happy about this). I was hoping LDN would finally put a stop

to

> attacks but I guess not in my case. I'll still continue for a while since the

> stiffness that it caused in the beginning has let up but if this happens again

> I think I'm going to give up and just wait for Antegren which could be out as

> soon as November.

> Lenny

===================

Lenny,

You should have waited this out, it may have been short lived. This is not

progression, it's old symptoms jumping back in for awhile called a pseudo

attack. Maybe you over-taxed your body or you've recently gotten an unproperly

mixed batch of LDN, you could have an infection, like bladder that you are

unaware of or you may be under stress, you may have gotten too hot. Always take

these things into consideration and then if things don't get better within 1

month, then think of the steroids. LDN has little chance of working to halt new

symptom progression when you take steroids like Solumedrol. Steroids suppress

the immune system terribly and works hard against LDN leaving you wide open for

new, never experienced before symptom exacerbations.

[Guest guest]

A flare up after seven weeks is (in my opinion) to be expected, but will it last?

Probably not,if we are to believe everything that the well meaning Dr. Bahari claims.

One common denominator that I have found on this site and also from my personal experience with friends and nieghbors, is that if you have an attack, psuedo or otherwise,and if you have the "luxury"of getting an alternate treatment,ie solumed or some interferon then you will use it.It probably will work.

For those of us that can not get a prescription for these we have to tough it out.

Now I have found around here that those of us that are PPMS or SPMS and have only LDN are staying on it and improving!

Those that are still RRMS drop the LDN and go on to rebif or copax etc. maybe solumed or betaferon and claim that saved them.

question?.(now don't laugh)...could it be possible that LDN makes one go back to RRMS or at least simulates this, before it stops the progression?Now of course this is given the possibility that you started out as RRMS and progressed to SPMS as some literature suggests.

I know I did but like Bou (I hope thats right)I only had one major attack and then a really long period of good health(well twelve years)!

Either way everyone is happy as they can be to have made that choice in their lives.I will not try to talk anyone out of making up their minds for any therapy.

By the way my hip and leg went numb too but went away and came back about every four days now since the weather started to get miserable, sixteen days ago..

Reg

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

From: low dose naltrexone

Date: 07/08/04 16:06:07

low dose naltrexone

Subject: [low dose naltrexone] Flair up after 7 weeks on LDN

My left leg from the hip down has gone numb and weak this morning. I know from past experience what this means. Called my doctor this a.m. to start solumedrol (not happy about this). I was hoping LDN would finally put a stop to attacks but I guess not in my case. I'll still continue for a while since the stiffness that it caused in the beginning has let up but if this happens again I think I'm going to give up and just wait for Antegren which could be out as soon as November. Lenny

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

This has been coming on for the last 2 weeks and the last 5 days my leg is dragging. I have had minor flares before a and have waited them out. This is a full fledged attack this time.

Lenny

[Guest guest]

Lenny,

I know the feeling. What level of progression are you at? At a point, some of us get to where the exacerbation just never seems to end. Maybe it is permanent damage, who knows? I doubt that LDN has anything to do with it. We all want easy answers and quick fixes, but there just aren't any. I still have to believe that LDN has stopped my progression, but I still can't walk, have no balance, can't stand, difficulty using the restroom facilities, somedays I still get extremely fatigued. Yesterday, I visited with a woman who told me she is bedridden with MS, but she can still walk with a walker some! I thought to myself, "Wow, I must be beyond bedridden!" Not to belittle anyones situation, but I fight and struggle to get in and out of bed and on and off of the toilet. I guess, again, it's the individual thing and peoples determination to not go down without a fight! Everyday I feel as if I'm fighting the devil, and I'm going down swinging!!

Hang in there. Do what you must!

Marcie (PPMS)

In a message dated 7/10/2004 9:35:00 AM Central Standard Time, usaispy@... writes:

This has been coming on for the last 2 weeks and the last 5 days my leg is dragging. I have had minor flares before a and have waited them out. This is a full fledged attack this time.

[Guest guest]

> This has been coming on for the last 2 weeks and the last 5 days my

leg is

> dragging. I have had minor flares before a and have waited them

out. This is

> a full fledged attack this time.

>

> Lenny

============

If you've experienced this symptom before in the past then it's not

considered progression of your MS, Just a flare-up of an old symptom

which can happen while on LDN. LDN cannot repair damage already done

by MS. So if it's an old symptom don't panic, you're not

progressing, just having an old visitor. You may have done something

to cause it or the weather may be aggrevating it, or you may have an

infection you are unaware of at the moment or are under stress. What

mg of LDN are you taking? Are you at 4.5mg yet?

[Guest guest]

At this point I am again confused about this "pseudo-exacerbation" phenomenon...

If I have a return of previous symptoms that become permanent I consider that progression. At one time I was numb from the nipple line down. I recovered pretty well from that. However, if I was to become numb again and STAYED that way I don't care whether you call it a "pseudo" anything, I've lost ground. Something would have happened to make that a permanent change, if not an exacerbation then what? It seems to me the only way to know for sure if you are experiencing a true exacerbation or simply a temporary worsening of symptoms is to just wait it out. And of course any time a worsening of symptoms occur it's a good time to take a look at your overall health, stress level, environmental issues, etc.

(Like this font???)

JT

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

From: Bren

low dose naltrexone

Sent: Saturday, July 10, 2004 1:53 PM

Subject: [low dose naltrexone] Re: Flair up after 7 weeks on LDN

> This has been coming on for the last 2 weeks and the last 5 days my leg is > dragging. I have had minor flares before a and have waited them out. This is > a full fledged attack this time.> > Lenny============If you've experienced this symptom before in the past then it's not considered progression of your MS, Just a flare-up of an old symptom which can happen while on LDN. LDN cannot repair damage already done by MS. So if it's an old symptom don't panic, you're not progressing, just having an old visitor. You may have done something to cause it or the weather may be aggrevating it, or you may have an infection you are unaware of at the moment or are under stress. What mg of LDN are you taking? Are you at 4.5mg yet?