Hi
i was diagnosed with MS 22 years ago and have managed to cope with it fairly successfully despite no medical support. I am now in the throes of the worst relapse I have had and would like some advice.
My hips just don’t want to work, my right leg is a lump of wood and I can’t bend my right foot at all. I am having awful sleep because my leg is spasming and subsequently am very weak and pathetic! Walking is very tricky because I am dragging my right leg and I am exhausted all the time.
As I said, I have never had a MS nurse and my gp is only now referring me to a neurologist, which he warned could take 3 to 4 months before I get seen.
What I need to know is are there any medications which I can take to help me sleep and get some decent rest? I have tried Amytriptiline and ibuprofen but they leave me even more feeble than before!
Any suggestions welcome please, I am really struggling here.
Thanks
Karen
I’m wondering why you aren’t going to A&E with this relapse? You’ll be assessed and treated and may even be admitted, if your relapse is treated with iv steroids. You may even be seen by a neurologist then.
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First off, I have no way of getting to A&E as I can’t drive. I also live in a first floor flat with 2 flights of stairs so can’t negotiate them. Also I am worried about leaving my husband as he is blind and will not cope if I am not here to point him in the right direction. I am in a bit of a tricky situation !
Are steroids the only option? If so, how long do they take to work?
I totally agree with what Poppy said. This probably needs whacking with steroids and A+E is the best place to go if you haven’t got a neurologist. MS is rare enough that most GPs will only see 1-2 cases in their professional career so I would get myself off to hospital quick smart
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Further to my last post, it will defo get you on the neurologists radar. Are you near a decent large hospital?
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I am near Wycombe General but there is no A&E there. That’s a good 20 miles away. I have called 111 and am waiting for a doctor to call me back
I am worried about taking steroids. They are the last option for MS sufferers so I have always recovered on my own. I am beginning to agree though, I can barely walk now so perhaps I may have to call for an ambulance?
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Just in case you still want advice on medication: I have taken Clonazepam for leg spasms at night for many years. It is actually an anti-epilepsy drug but works for spasms in low doses. I normally take 0.5mg before bed, although I do cycle it up and down a bit when my spasming is better or worse.
Hope you feel better soon.
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Hi, blimey! I am so shocked that you are only now getting referred to a neurologist! 22 years…bet that`s some kind of record for a referral!
I wouldve suggested amitriptyline for nerve pain and sleep...but youve already tried that to no avail.
When I was first being referred (back in 1999), there was a 10 month waiting list, so I went private for my first neuro appointment.
I was seen within a fortnight and then I went onto the nhs list.
Dont worry about what anyone says re queue jumping…you`ve waited 22 years!!!
Good luck.
pollx
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Thank you, I have an out of hours doctor coming so I will suggest that
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I have been seen by a neurologist but that was 22 years ago and until now I’ve not needed help because I’ve let my body fix itself until now. I’ve got a doctor coming out today so hopefully we can get the ball rolling
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Good point!
My GP told me that he just does what my MS Nurse (Queen’s Medal for Nursing) says.
Anthony
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hi B
baclofen works a treat on spasms but they made me sleep for england.
they also made my legs like jelly the day after.
that’s just my experience but hopefully you will find them great.
you still need an ms nurse though.
my main treatment centre is salford and i live about 20 miles away.
however they also do an outreach service and so i can see my ms nurse in bolton.
carole x
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My neurologist suggested I try Clonazepam first and Baclofen if it didn’t work, exactly because of the ‘jelly legs’ problem. See how you go with the Baclofen and discuss with your GP if you have problems with it.
Update - I am supposedly seeing a MS nurse in the next 48 hours. Apparently my surgery has no official record of my MS diagnosis, despite the fact that I have been registered with them for more than 25 years! My GP does not want to prescribe me steroids without the backup opinion of a MS specialist so hopefully the nurse will assess me and tell him what I need?
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Apart from any of this, I think you need to organise a back up plan. Unable to leave a second floor flat, unable to drive, a husband that is blind and unable to manage without you…how do you both manage day to day things?! Shopping, bill paying etc. Is there no one you can rely in in an emergency? What if you had a bad relapse or fall? What if you couldn’t get to your front door? I hope you can talk with your nurse, friends or relatives and get a little help to make life a little easier maybe.
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Hi
my MS is not normally an issue for me because I have always fully recovered from my previous relapses. Having a blind husband has not caused any issues because I am his primary carer. It’s only now that the roles are reversed.
The MS nurse has prescribed 5 days of dextramethosone so has anyone else used this and what can I expect? I am going to start them tomorrow.
Thank you for all the advice so far, you’ve all been very helpful!
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Hi
dexamethasone s a steroid that crosses the blood brain barrier, so is able to work directly on the nerves in your brain that are usually effected by MS. Steroids do have a habit of increasing the appetite and can cause fluid retention and can keep you awake, so best taken in the morning. I would say that the benefits outweigh the risks. I’m speaking as a nurse as well as an MS patient
Julia x
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I have 5 days worth of 2mg only. Maybe because this is the first time I’ve used them they are keeping the dosage down? I am still carrying on with the Baclofen because it is helping with the spasms but it has soured my stomach big time too! I know the steroids are likely to affect my stomach as well so the next 5 days could be tricky but hopefully worth it! I am taking them to stop my relapse getting worse, I know it will take time to heal but I can’t afford to lose the little mobility I have at the moment.
Some lansoprazole or omeprazole will help your tummy. That dose sounds about right, don’t want it too high at first as it’s quite potent
julia x
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