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What/When do get any treatments(if needed) sorry bit long

Hi

DX RR MS7 yrs

On Amantadine for fatigue and started on Baclofen as required .Rigidity and spasms increased so now on 60mg with little difference

Last 6 months or so have been a gradual downward spiral.

Cognitively am struggling really have to focus on things one at a time and thats tiring in itself! Left side is getting worse and so is fatigue. Am forgetting lots of things at work - sometime major things. So fear of losing job there.

Don’t get in arguments/discussions/conversations as tbh just too much effort!!So feel myself isolating myself from people as must seem uninterested in them just too much effort to focus brain and ask

I have seen a gradual decline of left side tho when I have been to Drs nothing said despite the fact that if lie down I couldn’t lift leg up that far .Last comment was ‘oh it is a bit stiff’ funny cos I thought I was having a good day with it lol!!!

Last couple of weeks my left leg is practically given up by evening and I’m dragging it sideways sometimes as easier than dragging it forewards .If floors uneven I have to over exaggerate the step otherwise high risk of tripping have dropped foot on left side as well which doesn’t help and I look like a thunderbird puppet! . I get upstairs by putting right leg up first then ‘pulling’ left leg.This adds to the tiredness carrying dead weight!!

Now right leg is starting to hurt dr thinks because its holding left leg up.Agree with that but now its sit down sore but can’t sit for too long as gets sore but stand up and gets sore

Now my question is as I seem to acquire lots of little relapses and nothing that puts me off my feet immediately they don’t see me as needing anything when should I get further treatment?

It seems to me that I need to be really bad before neuro will look at me (they have said that in past when went with what they called a little relapse,that wasn’t bad enough) but should I get seen before that happens?

Thanks for nothing else even if just getting it off my chest!!!

xx

Hi Gladys,

I have been on DMD’s drugs (REBIFF) for about 12 months now and the trigger for this was an increase in the frequency of relapses I was experiencing. From memory the hospital was using 3 relapses in a 12 month period as the trigger point for the DMD’s. To be honest I am not sure if they have had much of an impact i so far as my MS has progressed to either Relapsing, without any remitting, or to SPMS. To be honest its academic which title is used, the end result is exactly the same that being I am getting steadily worse! If you have an MS nurse then they should be the person who you are contacting on a regular basis and I would suggest keeping a simple diary to record all the relapses or potential relapses that you are experiencing, seeing it on paper may well give it a tad more gravitas when they are considerring the best treatment plan for you.

Good Luck

JC