Indecision ! HELP?

Everyday living
1

Hi everyone, Just wondering how many of you have been offered Dmd’s and chose not to take them,

Ive been on copaxone and couldn’t cope with some of the side effects, insomnia was one of the worst as not sleeping and having to get up 6am for work was really affecting my job, really need to be on the ball. Suffice to say chose to come off it. I’m waiting on my next neuro appt and results of my mri and think im going to be offered choice of another dmd.

Ive gone through a badish relapse this past year but seem to have settled back down, occasional bad days but on the whole fingers crossed pretty settled now.

My neuro said something about tsybri if scan showed changes but depending on scan one of the other dmds.

I am seriously thinking of saying no to any dmds as they all seem to have debilitating side effects but i also know that they could very well reduce any future relapses.

My neuro although very nice seems to get a bit narky when i question medication offered to me.

Sparkly xx

2

Hi I got comments from users on this site about tysabri, as I was told I met the criteria. I had the JC virus test, decided to have if pos or neg and now ave been told via on other scan I can’t have. The 1st neuro letter said I should have But never the less it is supposed to be very good, infusion 1 per month and good aftercare. If you are thinking about it look on this site MS ESSNTIAL NO 6. Hope it helps Mike :-}

3

Hi Mike, Thanks for reply, i must admit when he said depending on scan i fit the criteria for tysbari i was pleased as i know it really helps with relapse rates, but on hind site and probably cos i’m feeling better i just dont know ? just wondring how people who’ve said no to dmd’s are getting on.

Will look at site you’ve suggested, thank you.

Sparkly xx

4

He said that too me-apparently it not ot worse since may, when dx. JC was -ve. It good news I not had any meds before and it not got “worse” matter of opinion, walking worse- 2 crutches now, keep falling over The bad news - got into a mental state irrespective of JC result I would have tysabri. Evaluated risks of PML was gonna take chance, even though I got a young family. 3 kids @ home under 14. Now h rug been pulled ot from under me even though I got dx it uncertain. I really hope you find what you are looking for and make a decision right for you. Mike x :slight_smile:

5

Hi Sparkly,

I am a DMD decliner, but I was only a borderline candidate in the first place, and certainly NEVER a candidate for Tysabri, so I think your situation and mine are rather different.

When I declined, it was with the blessing of my neuro, who said he’d have done the same. But he did also promise he’d pipe up very loudly IF he thought I was making a wrong decision, and the time had come for me to reconsider.

So far, both he and I are happy with things “as is”. He’d like me to take a little less Baclofen - I want to stay as I am. But as I’ve been doing pretty well without the DMDs (not relapsing, that I can tell), that has not come back as an issue.

But if my neuro wasn’t happy, and thought I should be on Tysabri, or one of the others, I’m sure I’d be the first to hear about it, and I’d have to think very carefully, then, about what he was saying. I’m happy with my decision as long as he’s still happy. If he were to start telling me he isn’t happy any more, and wants me to reconsider, I’d have to give it some serious thought.

Tina

6

Hi Tina You have a top neuro, I suppose mine is and once I gt my head round this it be ok Mike x:-)

7

My ms has always been SPMS - so l did not fit the criteria. But l was told that for a lot of people the side-effects of dmd’s can be worse then the ms symptoms. [by the neuro at QE] - l have heard lots of favourable comments about Campath - and it l had RRMS - then thats the one l would consider.

l did start taking ldn about 4yrs ago. - This has made a big difference to my life - and l wish l had known about it years ago.

l have had spms for 30yrs - and the last 4 have been so much easier - no progression - less fatigue - more positive outlook

and a ‘brighter brain’. l eat a low carb - high protein/fat diet - lots of dark green veg - no grain [ l follow the Barry Groves diet]

l think you are doing the right thing - really look into all the pro’s and con’s. Do not let the neuros ‘bully’ you into doing something that you are not happy with. And lets hope future research comes up with better treatment for us - lf only they could find out ‘WHY’ we get it in the first place. And remember that its only a small percent of pwms who do end up completely disabled. lts not a forgoing conclusion.

F.

8

[quote=“Anitra”]

Hi Sparkly,

I am a DMD decliner, but I was only a borderline candidate in the first place, and certainly NEVER a candidate for Tysabri, so I think your situation and mine are rather different.

When I declined, it was with the blessing of my neuro, who said he’d have done the same. But he did also promise he’d pipe up very loudly IF he thought I was making a wrong decision, and the time had come for me to reconsider.

So far, both he and I are happy with things “as is”. He’d like me to take a little less Baclofen - I want to stay as I am. But as I’ve been doing pretty well without the DMDs (not relapsing, that I can tell), that has not come back as an issue.

But if my neuro wasn’t happy, and thought I should be on Tysabri, or one of the others, I’m sure I’d be the first to hear about it, and I’d have to think very carefully, then, about what he was saying. I’m happy with my decision as long as he’s still happy. If he were to start telling me he isn’t happy any more, and wants me to reconsider, I’d have to give it some serious thought.

Tina

[/quote] Hi Tina, you have a very nice neuro, I get on very well generally with mine but i do ask a lot of questions about side effects etc when he suggests medication, i then go away and google to get a rounded picture, i think this gets his back up ! makes me nervous of questioning him. I must admit had a very bad year relapsing and understand why he wants me on dmds but i just feel the side effects (when im feeling well) is far worse than the ms. May live to regret not going on them but then again may not, very difficult to decide.

thanks for reply sparkly xx

9

[quote=“Campion”]

My ms has always been SPMS - so l did not fit the criteria. But l was told that for a lot of people the side-effects of dmd’s can be worse then the ms symptoms. [by the neuro at QE] - l have heard lots of favourable comments about Campath - and it l had RRMS - then thats the one l would consider.

l did start taking ldn about 4yrs ago. - This has made a big difference to my life - and l wish l had known about it years ago.

l have had spms for 30yrs - and the last 4 have been so much easier - no progression - less fatigue - more positive outlook

and a ‘brighter brain’. l eat a low carb - high protein/fat diet - lots of dark green veg - no grain [ l follow the Barry Groves diet]

l think you are doing the right thing - really look into all the pro’s and con’s. Do not let the neuros ‘bully’ you into doing something that you are not happy with. And lets hope future research comes up with better treatment for us - lf only they could find out ‘WHY’ we get it in the first place. And remember that its only a small percent of pwms who do end up completely disabled. lts not a forgoing conclusion.

F.

[/quote] Hi campion thanks for reply, I believe in diet helping,(although i don’t think wine is on the list)

I know dmd,s are there to help but it’s just weighing up side effects affecting my quality of life(when im feeling well) and risks of relapse.

once again thanks for reply

Sparkly xx

10

Sparkly,

He’s been very good, but he’s not perfect. :wink:

I got exactly the decision I wanted re DMDs - i.e. not to have them - but also the reassurance that he didn’t think I was completely crazy, and in fact would have done the same. He’s not anti-DMDs, by the way, and certainly prescribes them for others - but very much each case on its merits. He didn’t think mine was such a compelling case. But he didn’t try to stop me, either. If I’d said I wanted them, he wouldn’t have stood in my way.

He’s not been so good in other ways, but I suppose you can’t have everything. In particular, he tends to be dismissive of symptoms I’m having that are not text-book typical, and say they’re nothing to do with MS! Well, according to him, MS seems to cause hardly anything, and ALL my symptoms are unrelated. I’m a bit baffled about why I feel so sh*tty all the time, but apparently, none of it’s the MS.

Reading here, I find a lot of people experience similar symptoms, so I’m pretty sure it IS the MS, but it’s a bit frustrating when your neuro has a blind spot about it, and keeps telling you it’s not connected.

Compared to some of the horror stories I read here, though, I guess he’s virtually a saint!

He encourages me to research stuff myself, as well - sometimes too much so. When I was in the process of being diagnosed, he wrote down for me the name of one of the conditions he suspected - so I could go away and read. I did so, and scared myself silly, as it seemed I would be dead in six months, without treatment. As I’d already gone at least a year without, I thought I was on borrowed time, and liable to drop dead at any minute!

He should have thought about that one more carefully, before telling me to go off and read about it. But anyway, I didn’t have that - luckily. Perhaps it was a way of making me feel glad I “only” had MS.

Good luck with whatever you decide!

Tina

11

Hi Sparkly, I have been on Copazone since January was dx last November,but this Tuesday decided to stop takeing Copazone, since March I have been having really bad mouth ulcers also in my throat finding it hard to eat, they took about 2 weeks to heal then came back after 5 days.

Did you have any mouth problems? I have not told my Neuro yet and not really sure about going back on any treatment with all the side affects,I’m also following a strict diet and taking supplements, but like you I don’t know which way to turn!

Sue