dpeterd
4 posts
Jun 19, 2009
7:26 AM
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Having being diagnosed with MG in early April after a positive blood test, my systems are mainly occular in the left eye. I am currently taking 3 x 60mg Mestinon per day, which I can increase to 4 times if necessary. However, I notice that over the last few weeks I am getting occassional cramp in my feet and sometimes my hands. Can anyone lete me know if they have had any similar symptoms please. The problem is like most of you, when you have a particular health issue you sometimes associate everything you get with that condition and sometimes they are not related at all.
Thanks,
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Peter Davies
Bridgend, South Wales
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TinaM
114 posts
Jun 19, 2009
8:24 AM
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Hi Peter
I have cramps sometimes (hands, legs & feet), I'm pretty sure this is because of Mestinon, rather than MG. I didn't have cramps with the initial MG symptoms but found they were more associated with Mestinon. I initially started on 30mg x 3 daily and was OK, but got the cramps when I increased to 60mg x 3 daily. I also get a little muscle twitching from time to time. I have mastered the correct amount to take now and rarely get the cramps & twitching.
I tend to let the amount of mestinon taken be driven by the amount of activity/severity of symptoms, rather than sticking to a precise dose. This seems to work well for me. Of course I can't reccomend you do the same but it may be worth discussing this with your GP/neurologist.
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Tina
Gloucestershire UK
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sally1louiselouise
763 posts
Jun 19, 2009
10:58 AM
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Hello Peter, Yes cramp can be associated with the Mestinon, there are quite a few posts on here regarding this problem. I get a lot of cramp in my legs and muscle spasms in my feet mainly my toes, but as always it is difficult to tell what can be attributed to MG or the meds or whether cramp would be there regardless of any medical condition.
SALLY
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South Wales
UK
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alice
373 posts
Jun 19, 2009
11:52 AM
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I do not know if this is specific for me, but I have noticed over the years, that whenever I try to take mestinon instead of decreasing my level of activity/resting, it almost always leads fairly quickly to fasciculations, muscle cramps and many times more severe weakness.
on the other hand if I adequately rest with the mestinon, most of the times I eventually have significant improvement, and do not have any of those symptoms.
I do not have a good scientific explanation for this,
alice.
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dpeterd
6 posts
Jun 23, 2009
1:50 AM
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Many thanks to you all for your comments. It is very reassuring to have such a site to pose questions and receive such helpful replies. Very often GP's can only answer basic questions and then say to ask your neurologist, but as these appointments are not all that frequent,being able to get ad-hoc advice makes such a difference.
Cheers, Peter
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Peter Davies
Bridgend, South Wales
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willegofar
4 posts
Jun 25, 2009
4:36 AM
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Hi Peter,soon after i started getting cramps in my legs and thighs i was prescribed quinine,1 tab at night,by my GP and after double checking with my consultant that it was ok to take along with all my other meds after a few days the cramps eased off,to the point now that i very rarely get them.Hope this is of some help.
Kind Regards
Willegofar
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dpeterd
9 posts
Jun 30, 2009
6:44 AM
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Thanks Will.
regards,
Peter
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Peter Davies
Bridgend, South Wales
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sally1louiselouise
772 posts
Jun 30, 2009
8:37 AM
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Peter, Please discuss the cramps with your neurologist and get his advice for any medication for them.......Quinnine is not recommended for MG sufferers.......double check with your neurologist.
SALLY
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Margaret
South Wales
UK
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Levitas
985 posts
Jun 30, 2009
9:21 AM
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This thing about quinine!
Some say a drop of tonic water in your gin will make MG worse while others take quinine to stave off cramp!
Tonic water contains about 83mg per litre quinine, whereas a tablet contains 300mg. You would have to drink 3.5 litres of the stuff to equal one tablet!
Does anybody know the truth?
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alice
392 posts
Jun 30, 2009
11:55 AM
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Levitas,
the truth in my oppinion is that every patient is different.
one responds to imuran, and one almost dies from it.
one responds to steroids and one just gets much worse.
one can drink as much wine as they desire, and one nearly "drops dead" from taking a few sips.
one only has ptosis and even that improves with no medical treatment, and one starts his "MG journey" in the ICU with a crisis.
one's major difficulty is brushing his hair, and the other finds it near impossible to walk up the stairs.
one has the "opportunity" to experience at one time or other every thing that MG has to "offer" and another only hears about it in support group meetings.
and to make things even more complicated, the same patient can sometimes be like that and at other times be like that.
I am sure there is a good line somewhere in "alice in wonderland" or some other book that could describe it better, but I am just not able of thinking of one at this moment. maybe you can?
alice
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