hi,
can any one tell me how long i might be taking this drug for?
i started with symptoms 8 months ago. i’m a lot better than when i first had symptoms, but ive still got the cling film feeling wrapped tightly around my arms and burning in my hands.i tried gabapentin and my dr was trying to increase dose til symptoms would all go. got to the stage of not being able to hold a conversation or think straight. better on pregabalin but haven’t managed to get rid of pain completely. weight has increased to more then when i was 9 months pregnant.Sometimes i feel a bit out of it and a little confused, i joke with my daughter that she took advantage of this to get a couple of guinea pigs!
still waiting for a dx. is it possible that it may not be ms .mri showed lesions, lumbar puncture showed o band things was told i needed another changed mri that would be done if i had more symptoms.
also when i asked my dr about heat making symptoms worse, eg washing up, hot bath, toasting bread in front of an open fire,she said there was no reason it should.
How long you take pregabalin really depends on how long you need it and it’s working for you. If you get to the stage when there is no pain or bad sensory symptoms, you can always try reducing the dose a bit. If the pain comes back, you know you need to go up again. If it doesn’t, you can try a bit less; and keep going until you either reach a lower dose that is working or you are off it completely. Please don’t change your dose quickly though - it can cause nasty side effects.
If you haven’t been on pregabalin long then you will very probably find that the confusion improves. It can take a while for our bodies to get used to it.
If you have had a positive MRI and a positive LP then it is very unlikely for it not to be a form of MS. There is a chance that you will never have another relapse though - that is why the neuro hasn’t confirmed MS and says you’ll need another attack / changed MRI first. The odds aren’t great, but it’s possible.
Your doctor clearly doesn’t know much about MS. Heat sensitivity is a very common feature of MS. Have a google of Uhthoff’s phenomenon. (And maybe print it off and shove it under her nose next time you see it!)
Karen x