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Can anyone confirm my new hand & foot pain is MS related

Hi to one and all. - I was only diagnosed about 3-4 years ago, but the Nuero thinks I have had it undetected for many years, lived abroad and was suffering loss a balance, resulting in several falls and broken bones. Came back to the UK in 2010, weighing just over 5 stone, almost the walking dead.

The good old NHS have surpassed my expectations. My wonderful G.P. sent me to St.Richards in Chichester, quite a long way, but firstly Richard Dewhurst, head of General Medicine and then the Neuro team and Urology team have been superb, as has my wonderful MS Nurse, Lisa.

Having moved last year I was forced to change my G.P. They provide prescriptions and regular B12 injections, also 6 monthly Stroke/TIA review - which are a a result of an almost fatal car accident in the early 90’s when I suffered an Ictus in my brain & a stroke. To me a waste of their precious resources, Heart, Lungs, blood pressure etc. always normal and have been for almost 20 years. BUT and it is a big one, they will not deal with new MS problems - say I have to wait for my next Neuro apt. (June 22nd) Also they only offer telephone consultations for non emergencies, no good to me, am 80% deaf, and can ni longer put my hearing aids in as my fingers don’t work.

I have suffered from regular, very painful toe & fingers spasms for a couple of years & twice after major stress had them in my chest (10 rounds with Cassias Clay type) I now take 6-8 baclofen a day as my hands and feet are almost constantly numb, my fingers no longer close together, the spasms last for hours now, rather than minutes.

Is this normal for those who suffer these symptoms?

I know that I will find out on June 22nd. but would like to hear from anyone who also suffers from this problem or could it be that I have something else wrong with me that is not MS related.

Thanks to all of you for sensible advice & support.

Mary x

Sorry Mary I can’t help as I don’t suffer in this way, hopefully someone who does will see your post and be able to offer help and support.

Best wishes

Jan x

Hi Mary

Whilst I don’t suffer all of your symptoms, I do have some similar. I have constant hand spasms emanating from the fingers,have known times when i’ve thrown glasses across the room (only water thank goodness). I have spasms around my waist and am not always able to wear a bra. Any stress or even excitement can start it painful. I hope you get some answers when you see your Neuro and perhaps some other treatment that may suit you better. I take 7 Baclofen a day but they don’t always help. A combination of Amitriptyline and Baclofen for the spasms, stiffness and ms hug but stress is the one thing that can make it worse, a lie down can sometimes be helpful.

Wendy x

You could phone Lisa, she’s my MS nurse too and is always happy to take a call. If you can’t make the call because of hearing problems, try texting her or emailing. You could always text to ask for her email address if you don’t already have it. She could then speak to your GP or even your neurologist on your behalf to get a prescription if needed. it sometimes takes her a couple of days to reply to an email but she will answer. And if it’s as bad as you say, waiting 2 months for help seems a bit much really.

There are many drugs you can get for spasms, I’m on Baclofen too (at about the same dosage) but have really suffered with spasms in my legs; recently I’ve started Clonazepam for the spasms. The jury’s still out as to whether it will work as I want it to, because it’s also a sedative so can only take it at night (I’m hoping as I get used to it I can start taking it in the day without falling asleep all the time), but it’s a start!

Sue