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-   -   Deciding you are DONE (https://www.neurotalk.org/multiple-sclerosis/90077-deciding.html)

slskckjebw 06-17-2009 05:57 PM

Deciding you are DONE
 
Has anyone ever gotten to the point where they decided they were DONE?

I have been taking Avonex injection for more than a year and have had progression.

I can NOT do it any more. I skipped last weeks injection and will not be taking this weeks injection. I see a new MS doctor on Monday because my other one retired.

I went off of the prednisone too. I could not take it any more. I am feeling better. Not great, but better.

I was told by my psychiatrist that combining the anti depressant I am on and prednisone was not a good idea. My MS doctor wanted to do it anyway.

So I started a very low dose of prednisone. It did help my legs a little. I could tell a small difference and I am sure it would have been more impressive at a higher dose, but he wanted me on it long term.

I stopped taking it. There has to be a point where you have to stop. How many drugs can they expect me to take?

I am still on the ones I need for trigeminal neuralgia and spasms, and the AD, but I have to live my life too.

I take provigil to help keep me going.

I can not put that needle into my muscle any more. :(

I feel battle fatigued and I have only been at this a year.

LA

SallyC 06-17-2009 06:22 PM

I hear you LA..:hug:

Judy2 06-17-2009 06:27 PM

LA -- I'm sorry you seem to be down in the dumps right now. Probably everyone here has felt that way at some point during the course of this lousy disease......you're not alone. Of course that doesn't help how you're feeling.

Have you considered trying one of the other CRABS? None of them agreed with me -- nor prednisone or solumedrol -- but I've been taking low-dose naltrexone (LDN) for a few years now and am very happy with the results. Taking a capsule everyday is so much easier than an injection. Have you done any research about it? There is a sticky on this site with links to other places.

At my last neuro appointment, he said that for the number of years I've had MS, 19 official and most likely 14 before diagnosis, I should be in worse shape and that the LDN must be working. Just a few thoughts for you to consider.....it's way to early for you to completely give up!!

Take care.......:)

SandyC 06-17-2009 06:32 PM

Yep, yep and yep, Jim said.

Kitty 06-17-2009 06:59 PM

I can totally relate, LA. It's a defeated feeling. I'm so sorry you're having to go through this.

Have you thought about LDN? It's just a pill you take at bedtime. I did the DMD's and couldn't handle them. LDN was my last resort......and I'm so thankful I tried it. Just wish I had done it sooner!

slskckjebw 06-17-2009 07:09 PM

I am considering LDN. I want to see what this neurologist says on Monday. I want to check him out and see if he might be open to that idea.
I do not understand LDN or really know what it is except for what I have read from others who use it.
I am also considering another one on the crabs and I am sure I do NOT want an IM or one that causes the awful flu symptoms. I never got over that problem.
If he is not I have another neurologist on my list.

Thanks!
LA:hug:

Quote:

Originally Posted by Judy (Post 524711)
LA -- I'm sorry you seem to be down in the dumps right now. Probably everyone here has felt that way at some point during the course of this lousy disease......you're not alone. Of course that doesn't help how you're feeling.

Have you considered trying one of the other CRABS? None of them agreed with me -- nor prednisone or solumedrol -- but I've been taking low-dose naltrexone (LDN) for a few years now and am very happy with the results. Taking a capsule everyday is so much easier than an injection. Have you done any research about it? There is a sticky on this site with links to other places.

At my last neuro appointment, he said that for the number of years I've had MS, 19 official and most likely 14 before diagnosis, I should be in worse shape and that the LDN must be working. Just a few thoughts for you to consider.....it's way to early for you to completely give up!!

Take care.......:)


slskckjebw 06-17-2009 07:11 PM

:hug: It is good to know others get it.

Quote:

Originally Posted by SandyC (Post 524713)
Yep, yep and yep, Jim said.


slskckjebw 06-17-2009 07:13 PM

It is an awful feeling. I am finally MAD about the situation and something has to change.
I need to do a lot of reading about LDN before I go to the new neuro on Monday.

LA
:hug:
Quote:

Originally Posted by Kitty (Post 524726)
I can totally relate, LA. It's a defeated feeling. I'm so sorry you're having to go through this.

Have you thought about LDN? It's just a pill you take at bedtime. I did the DMD's and couldn't handle them. LDN was my last resort......and I'm so thankful I tried it. Just wish I had done it sooner!


NurseNancy 06-17-2009 07:46 PM

dear LA,

i havn't had to make that decision yet but i certainly understand.
it's very hard to not feel well day after day and have the shots make it worse.

i've been on copaxone from dx. i had a hx of depression and we didn't want to make it worse with the interferons. you have to do a small shot SQ everyday but it doesn't cause flu like sx's. in the beginning i had unpleasant site reactions but with practice and time they have lessened quite a bit.

whatever you decide will be right for you. and take your time.
please let us know about your appt.

Dejibo 06-17-2009 08:13 PM

oooh oooh !!! ME ME ME!!!

I have talked myself into each daily shot for a long time now. I am sick of it. Why am I sticking myself every single day? Why? I have lumps, bumps, I am tired, I am overwhelmed, and I am quickly reaching the point of saying enough.

I go in July for my MRI and follow up appointments. I may be laying down my needles. lets see if I get a second wind by then.

I know EXACTLY how you feel. :hug:


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