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Lull before the storm? I really hope not :s

Well I have spent 2 and half weeks feeling ‘ok’ really. Meds were keeping everything under control and my eyesight had improved massively.

And then I woke up this morning with blurry vision, feeling absolutely dreadful again, the tremors and jerking seem to be much worse today, the back spasms are back with a vengeance and I just can’t seem to stay balanced and have so far walked into 2 door frames and fell up the stairs. Oh and I forgot to mention the awful pain I am in - its like my hands have been put in a vice and my right leg has been stretched on a rack (and is once again not working properly).

My neuro appointment is on 25th September, and after undergoing 3 months of all the various tests ordered, my neuro was confident of diagnosing me then.

I have taken all my tablets this morning (as usual) - 2 x 50mgTramadol, 2 x 10mg Propranalol, 2 x 100mg Carbamazapine (and a hay fever tab :D). But the pain killer is just not working now, and the Carbamazapine (for the tremors/jerks) don’t seem to be either. On the plus side though, the hay fever tab has kicked in and is working fine :D.

Should I go back to my GP (I have an appointment next Wednesday anyway) and report all this. I would phone the neurologist, but when I have done that before they seem to refer me back to the GP for now.

It has taken an absolute age type this out as my thumbs have remained numb since April, and now my fingers and hands hurt so much!

Anyway, any help/advice would be appreciated.

I am hoping that you are all having a good week/day/hour :smiley: xx

I’d always recommend talking to your GP if you are feeling worse.

I hope you do feel some relief soon though, that sounds all a bit rubbish x

It sounds like you might need a review of your meds. If everything was working, but now it’s not and the symptoms are the same as usual, then a simple increase in some of the meds might get everything back under control. Carbamazepine isn’t normally prescribed for spasms/jerks to my knowledge, but since you are already on it and it can help with neuropathic pain, it might be worthwhile asking the GP to up the dose a bit until you see the neuro. (200mg/day is a low dose. Or do you take the same again later on in the day?

Please make sure and get your meds properly reviewed when you see the neuro. They sound wrong to (unqualified!) me.

I hope the GP can help.

Karen x

Thanks FeeHutch and Rizzo

Rizzo - the neuro said she was prescribing Carbamazapine because it was an anti-epilepsy drug and that it may help with the uncontrollable jerks/tremors I had (three months ago) - which it did help massively and yes I do take the same doses of all the tabs at night too :smiley: forgot to say. Why do you think they sound wrong?

I will be seeing the GP next week now as no chance of getting an appointment this week!

Pxx

I’m really not remotely qualified to question a neuro’s prescription, it’s just that tramadol helps with “normal” pain, but not neuropathic pain, and carbamazepine is not the normal choice of med for spasms. So if your fingers, hands and leg (and everything else!) are really painful, it seems that you just aren’t on the right meds.

I hope your GP can help.

Kx

Thanks Rizzo.

I see the neurologist again on the 25th Sept so will be discussing many things with her… I keep writing down lots of questions and my thoughts on things! Let’s hope the appointment will be another hour long one as I think I will need it - I will also be getting results then too!

Pxx