Jan there is no one else in my family that has it,I would love to give it a try and let you know though. My Doctor is going to set up an appointment with a Specialist and I am going to express my interest in gving it a try.....It may or may not work as good as Mexi for me, but I won't know unless I try it. So I will keep you posted on any progress but in the meantime I would love to hear from people who are taking it and even more than that those who have tried both Mexi and Quinine and what they think of each of them

Jan, I took quinine (for my Beckers) for about 3 years as a small child (about 3 to 6 years) and there was no noticeable difference in the stiffness. I never tried anything else,as I've mentioned before. I am tempted to try the mexilitine(sp?) after reading the recent posts....

I'm recessive and have had no luck at all with any medication

Thats the way the cooky crumbles...

Kev

I took quinine as a very small child. I actually do not remember taking it, but I do remember my mother telling me the reason she took me off it was because I was having hallucinations caused by the quinine. I must have been about 2 or 3, maybe. I haven't read here anything about that on this board. Wonder if anybody else has had similar experiences?

Linda,

There is quite a bit of documentation of hallucinations in children given quinine and it is listed as a possible side effect for adults. Apparently it's easy for children to get a toxic dose...maybe they can't break it down as easily and it builds up in their system.

Jan

Jan, I can't help. I haven't given my son any drugs. I am against medication and drugs so I am trying my best to not do it. He is doing great. Things stink...but he lives with it. He is old enough at 14 to decide to not take anything and deal with it. Honestly, after reading about the drugs on this forum...I prefer he live life without any of them...If he can.

Carol - Since I was never diagnosed until I was 54, I never took anything for my MC either. I had good periods and rough periods over the course of my life. I sometimes had years where the symptoms were mild enough not to really interfere at all... The best time was when I was eating Macrobiotic foods - for some reason, that diet really agreed with my body. Anyway, once diagnosed, both neurologists suggested I try Mextil, but having lived so long with the condition, and not being a fan of taking medications I can live without, especially when they are specified for things like heart problems I don't have, I opted not to try it. I figure I learned to deal with it well enough to live a normal life overall, and relatively normal physically, so why rock the boat. It does seem that many people are very pleased with the results of Mextil, quinine, etc. I'm so glad there are things for those who really need the help, and available to the rest of us,just in case we do. You're a great mom! lois

Speaking from a guys point of view, I have tried without and with the mexi and without is pure hell compared to with, people take meds everyday and I understand why you would not want him to take any. But being 14 he is still very young and has alot of time ahead of him. With out the mexi I would not have been able to play competitive sports as well as I did and feel as great as I still do....I think you are a great Mom for letting him make the choice now he is old enough, Mexi may not work good for him OR it may allow him to enjoy a quality of life that a 14 year old deserves to. I am thankfull everyday for my mother and God for allowing me to take Mexi, and the reason that I am interested in Quinine is "Who wouldn't want to have a better quality of life" it is easy for Doctors and people who don't have MC to say not to take meds but when you feel what it is like to run like the wind and the feeling of freedom you get from it you will understand the worth.... I would never hold my son back if he had MC from taking meds because I have first hand experience, even if it did shorten my life span I would still take it so I could enjoy life while I was here and so my family could enjoy me more as well. I hope this isn't taken the wrong way as some times text can (expressionless) after all I am just speaking from my own opinion. I hope everything works out well for him and if he ever needs another man who is relatively young (31) to talk to you can send him my way, I would never promote meds to him just let him know that we can do everthing anyone else can and to fight twice as hard as everyone else to do the same things they do is gradifying and worth every sore muscle in your body!!!

As a 57 yr old female who had been diagnosed at 35 and put initially on Dilantin, I thought it was a miracle drug. The drug eventually lost it's punch and I reverted back to my old state. Having had free movement for so long was a blessing. I had to find another med. i told my DR. about this website and the drug Mexilitine. It's been about 7yrs and I don't plan on cutting it out anytime soon. I am able to do homecare without risking anyone's life. I can drive better, I don't have to worry about getting my neck locked in one position when I'm at an intersection. Sure ,I coped as best as I could before medication, But i feel I have a better quality of life with the medication.The last thing I worry about is shortening my life span.In fact, I don't fall down in front of moving traffic any more.I think that would be a worse fate!

LoL death by bus would not be fun

Hi John, You just reminded me of all the times when I was little. My mom would never let me stand or warm up before our stop, She'd always be in a hurry. {She thought I was procrastinating}anyway , She would either pull , push, or drag me off the bus. She would drag me in front of the waiting bus at the intersection, we'd always have the green light and I would freeze and fall over like a log every single time. Of course , I wasn't diagnosed until around 30 yrs later. A Dr at the time said I was afraid of buses. Oh well......

I had similar problems getting on and off the bus at a young age too, I used to tell people that Frankenstine was a relative of mine in elementary school when people would ask what was wrong LOL

getting on the bus after school, with all those strangers potentially looking at me, was the bane of my childhood. i acted like an absolute fool in order not to freeze up while climbing those dreaded huge steps - when i saw the bus coming, i'd start dancing around like a total idiot. and getting off the bus wasn't that much better, except that i was very strong, and could hang by my arms if need be! fortunately, there are plenty of 'unusual' people in New York City, so i probably wasn't as much the center of attention as i feared. lois

LOL I am sure everyone on here has experienced thia as we have. We need to laugh about our creativity. and I am glad to hear other stories of the same. No point in allowing it to give you nightmares or that deep down feeling of stress, stress will kill us worse than medication and Cancer combined