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How long do relapses last?

Hey everyone, just wandered how long everyones relapses lasted. I know they do vary from person to person. My first epsiode seemed to last 4months with some residual symptoms left, then I had the hug for a week and now I've had what I think is TN and some mild parasthesia for the last 2 weeks.

I'm undiagnosed but my neuro said to contact if anything changed or worsened. The problem is by the time the neuro secretary responds and I even get seen the symptoms may have got better or not be the same. Last time with the hug I got no response and found out the secretary had gone on maternity leave incidentally. This time I've ended up struggling for the last 2 weeks (friday I could barely chew my food I was in agony) but the last one/two days it feels like it's more bareable and perhaps I'm over the worst.

Me and my neuro don't have the best relationship as it is anyway hence I don't jump to tell him everytime something new starts as I know he's likely just to send me off and say ignore it. I'm just worried about emailing his secretary now in case it all calms down and he accuses me of being pessimistic and a fraud (I waited to get my eyes and teeth checked last week to see if it was related to that). Does anyone else have these issues getting seen quick enough to get some help? I would even book to see my GP but it's a week and a half for an appointment and they're not to keen on doing anything without the neuro's advice. It feels a bit of a vicious circle.

Reemz

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Hope I'm making sense!

Hello.

I feel for you I realy do.You do NOT have to go through the neuro to get medicated.My GP prescribes what I need.Initialy the neuro prescribed 10 mg Amitriptyline but then my doctor trippled it then upped it to 40 mg,my GP also prescribed Baclofen for the spasms and fully body ridgedness.They did not contact my neuro to see if this would be ok,I asked the doctor myself and went on what my physiotherapist told me,may I add I had to get a physio myself.

Please ring your GP I am sure they can help,do NOT sit in silence and suffer.

A relapse can last a few days,weeks or even months,why should you roll over and just take this situation?

You do NOT need to be diagnosed to get medication or help.You can ring adult services/Social Services,you can get a physio,walking aides if needed to get around.

Please ring your GP as soon as possible.

Charlie,x

If I were you I’d try and enrol a GP. If you’re waiting for a relapse for a diagnosis, you really need a medic to confirm it for it to “count”, but neuros are nigh on impossible to see quickly unless you go privately so a GP is the natural fall back. 10 days to see one is ridiculous though (surely that’s against guidelines?!) - a relapse might only last a day or two! So can you get a GP on side so that you can get seen straightaway when something happens (if it’s too late for the TN)?

I learned recently that there is a sort of traffic light system for prescribing meds. If a GP prescribes unapproved drugs, it sets off a red light at the PCT and he/she gets into trouble. Some GPs will do it anyway, but a lot won’t. A lot of drugs used for MSers set off red lights which only a diagnosis / approval from a neuro can override.

Maybe you should find a GP surgery with walk in clinics and/or emergency appointments if yours won’t budge? Getting a practice with a bit less fear of the PCT would be helpful too! No one should have to suffer TN without neuropathic painkillers!

Karen x

Thank you for the advice.X

It seems to depend on which GP in the practice I see as one of them did give me diazepam for neck spasm last july (when I had no neuro symptoms though). I've booked myself in now next tuesday to see the most helpful one and will discuss with them the possibilty of how to contact and get seen when I'm having a lapse of symptoms so that I'm hopefully not in the same situation. The traffic light system sounds interesting - I'll ask the GP this time round about it in case that is why they're not prescribing.

Getting hold of the neurologist is a nightmare. On top of that the new locum secretary covering his normal secretaries maternity is useless. The other one use to email back and acknowledge and tell you what the plan was so at least you know something is happening. This one reads the email but no reply so I don't know if I'm being ignored or if she's waiting to speak to the doctor. Doesn't help me in the mean time. I think if I don't get any action by thurs I'll ring.

Yes chewing problems is no fun. It's like I was fighting against my jaw to bring the left side together and when I did it over estimated and my teeth banged not to mention pain in my jaw in the attempt. It still feels tight at the mo but at least it's not spasming as much as before so I manage some soft stuff.

I know I've said it many times before but I'm so grateful for all the advice everyone gives and for the forum. When you're stuck in limbo and you have njo idea where to turn it's nice to know you're not alone or kicking a fuss over something irrelevant. My partners great but sometimes it is hard for them to understand whats happening to your body especially when they can't see it.

Reemz

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