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Re: Re: Re: Living with Thomsen's for 50 years & on a drug I don't see anyone else on.

Been some time since I posted here. Glad to see people are getting along well with medications.

I had a rather nasty tangle with Mexetil. I took it for about 10 years and suddenly had heart arrhythmias one day that potentially could have killed me. All came back to that drug. It turns out that in the past this drug was just prescribed, now patients have to pass certain cardiac testing first.

Well that was fun, back to the neurologist to find out what my options were. I found a drug with no side effects. Neurontin, is what I am taking now. There are lots of rumors going around on suicide with that drug, while that may be the case for a person that is already depressed and contemplating suicide anyway [point is in my opinion most people have the feelings before the drug, and the drug is a scapegoat] - I have yet to feel suicidal, in fact am much happier.

Mexetil gave me rediculous side effects mounting slowly over time... almost like a permanent flu - as I realized after not taking it for a while. Body Aches, cramping, and general nausea.

Neurotin is much more passive, does not require blood testing every 6 months for liver issues, and on rare occassion may have made me a little sleepy, of course that could be my diet too.

Just another option out there. It also affects MC differently than the other meds I have tried. Istead of a reduced number/occurrance of sharp cramping, it is more like a sloth effect when a muscle cramps now. Between the two I would rather have the sloth effect and no health issues.

Re: Re: Re: Re: Living with Thomsen's for 50 years & on a drug I don't see anyone else on.

I'm glad to hear that you are doing well on Neurontin. How much do you have to take to get the desired effect?

Anne H

Re: Re: Re: Re: Re: Living with Thomsen's for 50 years & on a drug I don't see anyone else on.

Hi, a warning about Neurontin. I was put on it and started having bruising around my ankles and I was fainting. I couldn't sit through a movie that was overstimulating without fainting. It was stopping my heart.

If anyone who takes Neuorontin has those symptoms- it is linked to a rare metabolic disorder that increases ammonia in the blood stream. Liver tests will not show it, only a blood test for ammonia. I am not sure if my inherited circulatory disorder was responsible or not. I have not gotten enough answers. Maybe potassium was partially responsible, I do not know.

sugession for patient with myotonia congenita

hello sir,

i am writing this with my tears, bcs first time i am meeting the person with MC.

i am vipul joshi from India. i am a chemical engineer. i am suffering from myotonia conjenita since birth.but i came to know about it at the age of 14. first i take dilentin as per my doctor's suggesion. than they suggest me Mexitil which is quite effective on me. it gives much reliefe.

presently i get admission in adelaide uni. australia for master in Engineering science (by research). so i am worrying about my desease due to new location. is there any patients or any association for myotonia congenita in australia? if you have idea pls suggest me.

sir, pls would you reply me that where you live? any association or patients are there who are suffering from myotonia congenita.

i have no words to discribe this deseases. it is only understood by those patients who are facing it.

i take mexitil twice a day (150gm). but mexitil is not available in India, so i have to purchase it from USA. and it is quite costly for me.because my financial condition is not very good.

so pls suggest me some cheaper sources for getting mexitil which is life saving drug for me.

KINDLY REPLY SOON.

THANK YOU VERY MUCH.

VIPUL JOSHI

Re: sugession for patient with myotonia congenita

Vipul,

I'm so glad you found the forum. I live in the United States but we have visitors on the forum from all over the world.

There is a researcher in Adelaide at the University of South Australia who studies myotonia congenita. I don't know if he sees patients personally, but he could certainly refer you to someone there who would. Here's his contact information:

Dr. Alan Bretag
E-mail: allan.bretag@unisa.edu.au
Phone: +61 8 8302 2398
School of Molecular and Biomedical Science
The University of Adelaide
Adelaide SA
5005 Australia

Also there is a Muscular Dystrophy Association of Australia at http://www.mda.org.au/

They may be able to help you find a cheaper source of Mexitil. There is an online pharmacy in Australia at www.epharmacy.com.au that sells Mexitil. I'm usually suspicious of online pharmacies, but they seem to have good reviews. 100 capsules of Mexitil 200mg from them is $28.60 (I'm assuming that's Australian currency). You can also get it in 50mg capsules. The prescription would have to be written by an Australian doctor.

Hope this is helpful!

Jan

Re: Re: sugession for patient with myotonia congenita

thank you very much mem for giving me such valuable information.

Re: sugession for patient with myotonia congenita

hello mem,

i am vipul joshi patient with MC.what is the advanced dignosis and treatment for this diseases. what is the future of this disease. is there any new invention for prevention of this disease.

is there any indian with MC, Whom you know pls give me their address or e-mail address.

person with mc can marry with woman with mc or without mc, which should be preferable.

is there any association for mc, which can provide any help for patients with mc. as a indian mexitil is very costly for me.mexitil is not available in India.

is there any financial help for such type of patients.

Re: sugession for patient with myotonia congenita

Vipul,

This is the only information I can find on an assocation in India:

All India Muscular Dystrophy Association
Anaj Mandi, Nabha Gate, PATIALA 147 001
Phone: 91.175 215 786 - Fax: 91.175 200 786
E-mail: aditi98172@yahoo.com

Since Mexitil is also used for myotonic dystrophy, maybe they know of some source in India.

I don't expect much to develop in the way of new treatments for myotonia congenita. It's too rare for most researchers to be concerned about, especially since it is not a life-threatening illness. We may see some gene therapy in the future, but I'm sure it's a long way off. There are no medications specifically for myotonia congenita. Anti-seizure medications and heart medications seem to work the best, but they're not effective for everyone.

The MDA article in Quest Magazine has some of the most up-to-date information about treatment and explains the condition very well. You can read it online at:

http://www.mdausa.org/publications/Quest/q86myo.cfm

The main way to diagnose it is still with an EMG (electromyography) along with family history and symptoms. There are two types and it's fairly easy to distinguish which type with the family history. There are DNA tests available through a lab in Germany, but it can take up to a few years to get the results.

Whether you pass it on to your children will depend on the type that you have, recessive (Becker's) or dominant (Thomsen's). If you have the recessive form, which means that no one else in your immediate and extended family shows signs except siblings, the chances of your children getting it are almost zero.
If you have the dominant form, you have a 50% chance of passing it on.

If you marry someone with the same type of MC, your children would all be affected. It takes a recessive gene from both the mother and father to pass on Becker's myotonia, but only a dominant gene from one parent to pass it on with Thomsen's.

Many of us with Thomsen's decide to go ahead and have a family. I don't regret it and neither do my children who inherited it from me. They both have children now and don't feel that it's enough of a handicap to never have a child.

I think a few years ago someone posted on the forum who was from India, but I no longer have the contact information. I'm hoping your assocation can put you in touch with someone nearby correspond and talk to. It does help to hear how other people handle this condition.

Jan

Re: sugession for patient with myotonia congenita

Vipul,

I tried to e-mail you some information with a couple of previous posts from visitors from India but it didn't work. Please send me a note to the above address and I'll pass on the information.

Jan

Information from Australia

Vipul
I am in Australia and have Becker's Myotonia and thought I would pass along some information for you.
The doctor's name, Alan Bretag, that Jan gave is the leading Australian specialist. I don't think he sees patients personally but when I emailed him some years back he sent a lovely reply. You could see any neurologist to get a script here or probably just a local doctor as specialists can be expensive even for those of us eligible for help from the government. There is nothing more they can do for us other than write a script so I just go to my local doctor. Usually I teach them about MC and tell them what medicine I need!
Recently, after having trouble readjusting following the birth of my third child, I went to a rehabilitation specialist who contacted leading specialists in MC around Australia and there was nothing else they could do for me. Jan usually has more up to date information! I have not contacted the MDA directly as there would be nothing they could do to help me but they have great internet information. Again Jan's website has been the best source of information and the best way to speak to others with MC.
For medicines in Australia we have a government scheme where lots of prescriptions dispensed in Australia are subsidised. We pay up to $28.60 for most medicines, and the Australian Government pays the remaining cost. That is where Jan got that price from. Unfortunately, the scheme(PBS) is only eligible for Australian residents or those from certain countries (India wasn't on the list), ie. those eligible for medicare. If you are coming as a student check on your eligiblity for medicare here as I am not totally sure about it. All this information I got on the internet. If you are eligible they also have strict laws about taking PBS medicines out of the country so make sure you check. I looked up the full cost for Mexitil and for 50mg it may be $28.60 and for 200mg, $56.40 if I read the document carefully. I will try and confirm that.
They are available from most large chemists/ pharmacies here. It is not a popular medicine so some do not keep them in stock. I used to check before I needed them as some chemists had to order them in for me but once they knew I would be a regular customer, they stocking them just for me.
Good luck with your trip to Australia and if need any information on Australia you can email me at striker_joe@optusnet.com.au.
Regards
Jill

Re: Information from Australia

hello jill,

thanks for giving me information. presently which medicine u r taking? any new invention for mc in australia? in which part of australia you are living?

Re: Living with Thomsen's for 50 years & on a drug I don't see anyone else on.

Hi Karen,
This is the first time for me to actually respond to another person with M C. I will be 50 years old next month and have lived my whole life with this disease. When I was a child I wished my legs had braces on them like polio victims. So people could see I had a problem. But because I looked normal I was made fun of. I was critized for being lazy, or not trying hard enough. I could not play sports that I wanted to do so badly, and watched my brother play on the sideline. I had all the excuses lined up and ready to go for any situation to cover up, if people would say something to me about why I would walk funny, or why I would skip gym classes etc, etc. Like you I have squeezed more fingers than I can count. We lived in Holland and came to Canada at the age of 11. My parent put me in sick kids hospital in Toronto for two weeks. I became a test case for the disease. They did all kinds of tests including electric pulsating current with needles up and down my legs. At the end they told me to consider myself lucky and try to live a good life. I have broken bones in every part of my body. These accidents occur when my body stiffens to a board, and I cannot react and just plain fall down. Each time this happens it is like slow motion and I hope that when the fall is done it will not be serious. I always feel exhausted and worn out, it takes all my energy to make it through the day. But M C has also been an incredible gift to me. It has taught me to live the moment. When I go up a flight of steps never to look up to the top but look at one step at the time, and before you know it I am at the top. It has made me appreciate life and not take it for granted. It has steared me into things I would never consider if I did not have this. I have two healthy children and a supporting family. I did some renovations to our home a while ago. This place was built in 1857, and out of the wall fell a post card sent to this house in 1901, it read, " Live, Laugh, and Love, there will come a time when you can't". That is what I try to do every day, and you are right you must have a sense of humour about it all. Do not let it take you down, but let it make you more powerful, and show the world that nothing will put you down. Thank you for letting me express and share some of my feelings. Live the moment.

William Knetsch
Guelph, Ontario
Canada

Re: Re: Living with Thomsen's for 50 years & on a drug I don't see anyone else on.

I have had the same problem for 50 years and have lived on quinine with no problems. My father lived on quinine for 74 years before he died with no problems. My question is since you live in canada are they also going to stop producing quinine. I was thinking about trying to order it through canada

Re: Re: Re: Living with Thomsen's for 50 years & on a drug I don't see anyone else on.

Rich,

Here's a site in Canada where you can order it with a prescription. You can get either 200mg or 300mg capsules/tablets.

Generic Quinine Sulfate

I'll also post this on the recent discussion about quinine.

Jan

Re: Re: Living with Thomsen's for 50 years & on a drug I don't see anyone else on.

I'm too appreciate your story, I'm experiencing the same symtoms as well as I approach my 50th birthday in September, I'm more concern of this fatiqueness in our bodies, I would like to know more about this subject as oppose to what is already noted and stiffness, walking slower, shorter steps prevents me from tripping, as you stated it's very scarey to fall, so have patience take it easy and you should be okay, as stated I really would like to combat the fatique what causes it and is there anything can be done.

God Bless
Howard

Re: Living with Thomsen's for 50 years & on a drug I don't see anyone else on.

I had to laugh when you mentioned there was no letting go of the ski rope. It reminds me of aii of the buses I had to take ,standing room only and hanging on to the hand holds unable to pry myself loose when my stop came up.And there was a many a time when I did fall in front of the same buses when my mom was trying to shove me from behind to hurry me along to cross the street. I am almost 60 now ,and I was diagnosed when i was 35. All those years before noone could come up with a name for it. My mom thought that I was falling in front of traffic to get attention. When diagnosed ,I was given Dilatin. It made me drowsy. Also the benifits wore off after about 5 yrs. Ive been taking mexilitine with great sucess and no apparent side effects.Keep up your wonderful sense of humor. tina