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teynhambees
16th August 2012, 21:29
Last evening I got up from my electric riser recliner and immediately feel to the floor nearly hitting a table because my right leg (calf muscle and foot) had severe cramp. My leg went completely rigid and so solid. Suffice to say brought tears to my eyes and screaming in pain! My poor nephew was staying with us and must have given him a real fright.
I was prescribed Quinine 200mg per day, which I took at night and seemed to have helped with cramps in my feet, however, my GP would not give me a repeat prescrition based on the fact that it was the side affect of another med.
I explained that I have suffered from cramps for 10+ yrs and now realise that this was one of the first symptoms of Kennedy's so it clearly isn't a side affect of any other medication i am taking.
My neurologist suggested Quinine which was the reason for taking it in the first place!
Ironically, I had a lifeline fitted yesterday (thank god) I dread to think what would have happened if my wife hadn't been there to help massage my leg and get me up on to a chair.
This morning I called the surgery and spoke to the oncall GP who has agreed I have a strong case to re-issue the prescription but advised to have some blood tests. He agreed we should wait for a response from the neuro to see if he recommends it long term or something else. I can't drink loads of bitter lemon as I CISC if I drink too much. So, my question is what do you do to help with cramp or what can I try to help?

MikeFD
17th August 2012, 00:25
Hi Scott -

I picked up on an enquiry from Michelle of a very similar nature to yours and put two or three links in to my reply to her about the problems of suffering from cramp and what others were doing in terms of medication. The thread can be found here (http://forum.mndassociation.org/showthread.php?1270-Re-muscle-cramps&p=9510&viewfull=1#post9510) and it should open on my post. Hopefully you can find some useful info from the links there and other posts in that thread.

You could also try entering 'Muscle cramps' in the search box at the top of the page - I found over thirty references that way. Then it's just going through the threads to find the various medications you could ask your care team about. Once again this is territory that MND Connect could probably help with, so give them a call on 08457 626262 or email them at mndconnect@mndassociation.org.

Hope you find a solution to your painful problem soon,

Best wishes,

Mike.

Ann
24th August 2012, 16:06
Hi
I was diagnosed with MND in May. I explained to my neurologist prior to the diagnosis that the cramps and spasms, particularly at night were unbelievable. I would scream with pain and they would last up to half an hour. Then he prescribed me Diazipam. They have worked wonders. I rarely get any spasms during the night and occasionally I get them during the day. Ask your Doctor about them.
Good luck
Ann x

15storeys
24th August 2012, 19:10
I have 200mg Quinine Sulphate and 0.5mg of Clonazepam and this works wonders - I rarely get any cramps at all now. The only thing I was told was to avoid taking Ibuprofen as this can cause liver damage in conjunction with the Quinine. Good luck with getting this sorted.

Becky

john
24th August 2012, 20:22
Irene used to take quinine sulphate having been prescribed it early in her illness for painful cramps. Although it worked no one told her to stop and so she never knew if the cramps had gone. I could not find it as a treatment on patients like me and so did a bit of research. In America it is used to treat malaria but for a short a time as possible. I came across this piece of english warning. http://www.mhra.gov.uk/Safetyinformation/DrugSafetyUpdate/CON085085 This suggests it is not very effective and shouldn't be taken for too long. If you are using it I would be cautious.
Irene stopped taking it and had no more cramps but it may have been just that her illness had gone beyond that stage.
This may just be scaremongering by ambulance chasing lawyers but it again suggests caution http://www.oshmanlaw.com/pharmaceutical_litigation/quinine.html
John

Jodianne1
10th September 2015, 01:19
I see it's been a while since anyone commented on cramps. I found purely by accident if I take 2 Nurofen (ibuprofen) before bed my cramps are reduced by about 90%. I can now get a better nights sleep. Yay! More energy during the day.

Terry
10th September 2015, 08:50
Thanks Jodi;

Things such as paracetamol help a little as well. You comment that cramps have not been mentioned for a while but many of what I call normal this have not come up here recently. I don't really know why, but please ask if you have problems or post if you have things that might help.

Love Terry

Christoff
11th September 2015, 14:42
Does any one get cramps of the digestive tract? I seem to get them once a day and they are unbelievably painful but only for about thirty seconds. Didn't know if it is related to MND or a symptom of IBS?

Terry
11th September 2015, 17:43
Not me Christoff;

Mind you I never know what's around the corner, never heard of that before.

Love Terry

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