Really Struggling

Hi all, as you know I’m waiting for my bloods to come back before I start my DMT. Hopefully it will be Tec. But I’m having yet more symptoms. This time juddering and internal trembling throughout my body and I feel like someone has stuck Space Dust randomly under my skin, but including my mouth and face. And my legs are so tired. And the tinitus is back and my eardrums are fluttering. And my hands are a bit shaky/jumping. I have emailed Nurse, but as I report new symptoms regularly, I don’t expect anything to happen as a result. I’m getting very depressed. I seem to have a cycle of new symptoms every month or so and they don’t resolve although after a long time they improve a bit maybe. Yet no new lesions on MRI. I am concerned that means it is actually progressive, although Neuro said my motor strength was normal. Presuming he meant normal for a very weak kitten who’s been out on the lash all night, but hey ho. Is it possible to have lots of mini relapses after a big one (I was very ill over the summer) Has anyone else had this then had it calm down? I do have a theory that moving my neck physically sets off inflammation around my lesion, but everyone says it doesn’t work like that. Anyone got any straws I can cling to? I seem to have run out.

Oh my insert deity of your choice here! It’s all one big block of words! I promise it was paragraphed when I typed it!!!

Hi Teal

Don’t forget it can take simply ages and ages to get partial or complete remission from a relapse. So it can feel like you’re getting little relapses all the time but actually they could be part of the original one.

And of course, some relapses only partially remit. This doesn’t mean you have progressive MS.

Obviously the diagnosis could end up being progressive MS but, so far, your neurologist thinks it’s RR. Hang onto that thought. Believe me, I suspect that every one of us who are RR, think from time to time “oh my ‘god(s) of choice’ (v nice way of putting it!) it’s become progressive” and it hasn’t. Ultimately it may be. For me now it probably has become SP. but that’s after 20 years. Just trust and believe that it’s RR.

Having RRMS doesn’t mean you are either in a relapse or you’re skipping about like a spring lamb. You could well have to learn to live your life with fatigue, tired legs, space dust under various bits of skin, random spasms, etc, etc. Sorry.

Sometimes it’s utterly depressing waiting for bloods, MRIs, results of any kind, appointments, drugs to start. Then again, sometimes it’s depressing having started the drugs, hoped for miracles and not got them, or have side effects.

MS is an utter bastard. Sorry if that offends anyone. But it’s true. Living with it can be utter crap. Hopefully, eventually you’ll get out of this relapse. Also hopefully you start the DMD soon (and that it’s 'Tec) and that you don’t suffer terribly with side effects. (Remember Paolo’s golden rule, try to make your doctors start you on Tecfidera very slowly, don’t accept one week of the low dose then jump straight to the high dose, go for a staggered approach, it should lessen side effects.)

Plus, once you’ve started the DMD, you’ve had some remission from your relapse, you’ve got some sensible drugs for ongoing symptoms (amitriptyline for the space dust maybe? Something for fatigue perhaps?) you’ll start to feel a bit better.

And then you can go back to living your life. Put MS on the back burner for a while.


Thanks Sue, as ever wise words. Can it really be like this though? I think I’ve had a year of new symptoms every month. I did wonder if my pregablin has just stopped working and I need more, does that happen? Used to take Amitriptyline, Neuro took me off. Might add it back in. My gut feeling is that the neck lesion can’t heal if I keep trying to do things so I need six months in a very quiet luxury five star resort having my every whim attended to. But instead I have ESA to deal with and a house to sell (too many steps and too expensive now I’m not earning but unfortunately needs work done before anyone else will buy it and I can’t do it and hubby is exhausted…) Now, I definitely put paragraphs in this.

oh my various gods (quoting apu of the simpsons)

it really is the pits this ms malarkey!

see your gp and tell him/her that you want to continue amitryptilene.

take up mindfulness meditation as a way to reduce that stressed out feeling.

now please realise that you can choose to go to that 5 star luxury resort every time you close your eyes.

good luck with ESA and the house sale

carole x

I already do mindfulness, probably too much of it tbh. I thought I should be more recovered by now. Everyone says just a few months at most, but maybe spinal lesions take longer. I suspect I’ve had this 17 years. Found a diary from 2002 where I mention wobbly legs and an ear that is blocked with numb skin around it, but on investigation no wax, and P&n and cramping toes and so on. MRI found two brain spots and second MRI found they had joined up. Told it was reassuring.