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how long is a piece of string?

Hi,
I’m still undiagnosed and think I’m coming to terms with the new me (not quite improved). The pregabalin helps but the side effects ( unbelievably hungry/thirsty and who needs to drink when you can be this confused and dizzy without alcohol)stink
I’m not due to see the neuro for a year now. She’s told me to go live life, that I may never have anymore symptoms. My question is does this happen in practice.I have a couple of lesions in the brain, an area of activity in the neck and o bands in csf. I feel tired. A bit weak and trembly. The worst pain is in my hands and arms. Co ordination is a bit hit and miss and some days I struggle to walk. Balance. The list goes on but it is so much better than I was. It would be easier to get on with life if I had no symptoms left. The positive thing is that I’ve got better than I was and I’ve found that you need to just hope. Hope I keep improving.hope I never have another episode. Hope they find a cure. And hope my daughter passes her violin exam. Is it likely that I never have episode. What are your experiences?
Thanks,
Lynn

Hi Lynn,

Firstly I hope your daughter passes her violin exam.

As to whether you will get another episode, nobody can really say, As you've said yourself all you can do is hope. If you have not been dx why aren't you seeing your neuro for another year?  Have you been given a MS Nurse, have you had any tests?

My experience was I had many episodes without realising what they were. It wasn't until I started getting myoclonic jerks that I was referred to a neuro, who ordered tests and looked at my history (30 years of it) and decided that I had RRMS. The point is I now see my neuro after 6 months of a dx, have seen my MS Nurse.

hth

Janet

x

Hi,
Thanks for replying. My 1st episode when I was admitted to hospital was early Aug. I had 2 mri’s and a lumbar puncture. The neuro checks reflexes and balance etc when I see her. I saw her after 3 months, then 6 months and last time she said 12 months. I haven’t been diagnosed though she said probable ms. Then when I saw her last she said ms but I’d need another relapse or a changed mri to fit in with the mcdonald criterea and confirm the dx. I haven’t been put in touch with a ms nurse but maybe that’s because I haven’t got a firm dx.
I can’t remember a morning now when I’ve woken up and felt good. There is normally some weird feeling or numbness. I joke with my daughter to hide the booze then I won’t wake up with such a hangover. (I don’t drink)
We joke about the things I can do some days and not others. Going down steps is scary. Scissors and tying shoe laces, can be tricky.
I’ve kept working but usually fall asleep as soon as I sit down. Go to the cinema, they dim the lights and I’m asleep before the ads have finished. But all in all I manage or delegate.
Did you find a time when all traces of symptoms go?
I really don’t know what to expect. Its all new territory for me.

Lynn

I'm sorry, but the fact that your LP was positive, your MRI showed lesions on your brain and spine and that you haven't made a full recovery (yet) means that your chances of developing MS are very high (from memory, 80%+, but I could be wrong). Saying that, it does NOT mean that it's a certainty!

The reason I put "(yet)" is that your current symptoms could continue to improve, especially if you get a referral to a really good neurophysio who can give you exercises to help with your balance and walking. So if you aren't seeing anyone, please ask your GP for a referral.

One of the hardest things to deal with about MS is the uncertainty. It does get easier, but I'm not convinced that anyone really masters it. I take the "what will be will be and, if it does happen, I'll cope, but in the meantime, SOD IT! life's for living" approach. Works OK for me anyway!

Good luck in the exam to your daughter :-)

Karen x

Hi, I’ll pass on the good luck wishes to Darcy, she’ll be chuffed. She’s 12 and loves the attention. Playing the violin is one of the things I miss the most. We started lessons at the same time. I’d got to grade 5 just before this ms stuff started and she’s taking her grade 5. I’m her biggest fan.
My neuro said I’d have to learn to be assertive and tell my dr what I need. I don’t know if it is their lack of knowledge on ms but I feel like I’m wasting her time. I never used to go to the drs so maybe its just a case of building up a rapport with her.
Thanks
Lynn x

Hi Lynn

Ditto to everything that Janet & Karen have said!

There's no telling if, when or how mild or bad another relapse may be. That's one of the bum deals with this darn thing. The only way is to get on with life as best as you can and deal with things as and when (and if!) they come along. Life's too short...

I'm also on preggie (can't always remember how to spell it...lol...) and I too find that I have a constantly dry mouth. Give your GP a call because there are things he can prescribe to help overcome the dryness. At the moment I'm trying out Malic Acid Pastilles.

Have you considered contacting the hospital and seeing whether they can assign you to an ms nurse? Might be worth a try - sometimes we have to be a bit pushy!

Good luck & all things dangly crossed that your daughter passes her violin exam with flying colours happy2

Debbie xx