myotonic dystrophy?
I am an aide for a seven year old girl that has congenital MMD, do you have experience in this? Please share it with me.
any and all website concerning this are helpful but I'm looking for some first hand experiences. One "goal" I have for this girl is to get her potty trained, is this a viable hope? I don't want to set her up for failure.
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http://www.myotonicdystrophy.org/
You can look at this website for info on that disease. (
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Myotonic Dystrophy?
I have this disease and it is fairly rare. Does anyone know anybody out there that has this and if so, any support groups or info sites you know of other that the site in England? I am in the US. Thanks!
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Some US sites for you.
If they don't look quite what you are after contact them anyway as they may be able to refer you to other groups, associations and even conferences that may be in or near your area. Also individuals that may live (maybe even next door).
Best wishes. (
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What is the difference between Duchennes Muscular Dystrophy and Myotonic Muscular Dystrophy?
What is the difference between Duchennes Muscular Dystrophy and Myotonic Muscular Dystrophy?
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When do you know when to give oxygen to someone suffering from muscular dystrophy.myotonic?
Believe it or not oxygen is a medication and has to be orderd by the doctor. So please follow the doctors orders (
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is muscular dystrophy, myotonic disorder/dystrophy and muscular system disfunction all the same thing?
autosomal dominant disease ,with different names (
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Myotonic Muscular Dystrophy and contraceptive pill? (urgent) ?
This is question my boyfriend asked:
I have just moved to Serbia from the UK to live with my girlfriend, and we made the decision that she should go on the pill.
After waiting almost a month for her next period, she finally got it and was given a blood test and examination, all of which came back ok, her white blood cell count was "slightly" above normal but we were told this could have been caused by a recent injury.
The Doctor however, has refused to issue a prescription for the pill as my girlfriend has a very mild form of Myotonic Muscular Dystrophy, a genetic disorder and he - and i quote - "does not know if there would be any side affects because of the genetic disorder, please go home and do some research to see if this would be ok and present me with the results"
Basically, the Doctor has advised us to turn to the internet to find an answer.
I am pretty sure that the contraceptive pill could have no side effect other than the "normal" ones based on the person having Myotonic Musculor Dystrophy, especially one that is in her case, so mild.
Can someone help?
Thanks
Zach & Jas
-Additional Details
Jasna is a very active person and only has a very mild form of Muscular Dystrophy. She exercises every day just as any person would, using exercise bikes, etc etc.
Physically, the only problems she has, is a balance problem, requiring to hold on to something as she walks, and due to some problem with grip in her hands, she cannot write very well.
Thats it.
Dayly, she is taking 2 vitamins for genaral health : Centrum (http://www.centrum.com/) and Acetyl L-carnitine (http://www.cellhealthmakeover.com/acetyl-l-carnitine.html. No other medications, and she wasnt taking any before.
Thank on your help, this is so important for us, both of us think that using only condom is not enough for protection
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FIRST off all....U need to go to another doctor for a second opinion. The doctor sent u away and told u to do research???? That is there job that is why we pay doctors lots and lots of money. TO GIVE US ANSWERS. looking for legit, sound medical adivce on yahoo answers is not right. My little brother has full blown muscular dystrophy and i have never heard of him NOT being able to take any meds simply because of his diseases. The birth contorl pills should have no direct influence on her muscular system. My brother takes various pills like antacids and calcium which have no effect on his muscualr dystrophy. Like i said i would def. go to another doctor......good luck (
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Question about getting pregnant w/ PCOS & Myotonic Dystrophy Type 2?
I am 23 years old and married for almost 3 years now. I was just diagnosed with PCOS a little over 2 months ago. Also I have been diagnosed with Myotonic Dystrophy (a milder form of muscular dystrophy) for 2 years now. My husband and I would like to start having at least one child before I get too old because symptoms can worsen as you age. I have already talked to my doctors about this and they don't see the problem with my getting pregnant. I have already been told I will be high risk due to the myotonic dystrophy and i have asthma. My question is though what are my chances of getting pregnant when I stop my birth control and start trying. My muscles are very weak from the myotonic dystrophy and didn't know if that or the PCOS would affect my ability. Also, sometimes it's hard or very rare for me to have an "O". I guess due to my weak muscles. What do u think? Will I have difficulty? My doctors have actually told me that getting pregnant may help my PCOS and my myotonic dystrophy symptoms. If I can't get pregnant I am going to look into adoption, but I really would like to try for my own. I saw a genetics counselar who said the baby will have a 50/50 chance of inheriting the myotonic dystrophy, but the counselar said even in healthy people each person has a chance of having a healthy or unhealthy baby. So, basically what do u think?
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Check it out here. It’s an excellent site with some wonderful options for you. It will definitely help you. Have a look.
http://www.muscular--dystrophy.blogspot.com/ (
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Myotonic Muscular Dystrophy and contraceptive pill?
I have just moved to Serbia from the UK to live with my girlfriend, and we made the decision that she should go on the pill.
After waiting almost a month for her next period, she finally got it and was given a blood test and examination, all of which came back ok, her white blood cell count was "slightly" above normal but we were told this could have been caused by a recent injury.
The Doctor however, has refused to issue a prescription for the pill as my girlfriend has a very mild form of Myotonic Muscular Dystrophy, a genetic disorder and he - and i quote - "does not know if there would be any side affects because of the genetic disorder, please go home and do some research to see if this would be ok and present me with the results"
Basically, the Doctor is too stupid and has advised us to turn to the internet to find an answer.
I am pretty sure that the contraceptive pill could have no side effect other than the "normal" ones based on the person having Myotonic Musculor Dystrophy, especially one that is in her case, so mild.
Can someone help?
Thanks
Zach & Jas
Jasna is a very active person and only has a very mild form of Muscular Dystrophy. She exercises every day just as any person would, using exercise bikes, etc etc.
Physically, the only problems she has, is a balance problem, requiring to hold on to something as she walks, and due to some problem with grip in her hands, she cannot write very well.
Thats it.
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Regarding muscular dystrophy.
Use oral contraceptives and other estrogen-containing methods as dictated by how active the individual is.
Immobility increases risks of venous thrombotic events.
If there is impaired bladder function in the patient, a diaphragm may increase the risk of urinary retention and urinary tract infection.
Again, if the patient who has Musculor Dystrophy is not an active person, I would not recommend the pill due to other serious life threating conditions that could occur.
The best thing to do would be to use a condom rather than risk the patients health or life.
You might also want to read this:
http://findarticles.com/p/articles/mi_m0CYD/is_6_38/ai_99376505 (
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Myotonic Muscular Dystrophy?
I Have MMD and was medically dismissed from the Army with no benefits(even thought i had no symptoms before i joined). I was wondering if anyone else here has MMD or anything kinda like it. I work at the VA hospital now, and at the end of the day I am wiped out. I am starting to have severe problems with my hands and feet, and i'm wondering what is going to happen to me. I know i can read about it on the internet, but i was hoping to get some responses from people who also have it. I'm currently 26, but i feel like i'm 50. Is there anything i can do to stop my deterioration, or anything to at least make me feel better?
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Jon all I can tell you is there is help if you know what you are looking for.
I can help you by showing you some medical information
http://scholar.google.com/scholar?hl=en&lr=&q=glutathione+Myotonic+Muscular+Dystrophy&btnG=Search
This is all from the medical field so I only have the health results I have obtained (no I don't have Myotonic Muscular Dystrophy and pray I never do.
Because I am keeping my Glutathione levels up I am 41 feeling 25. Really.
Contact me if you want to know more.
[email protected]
Later,
Randy (
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Best way 2 get pregnant with PCOS and Myotonic Dystrophy.?
I am 23 years old and my husband and I have decided that we want to try and have children beginning this year. I am stopping my birth control for 2 reasons: 1) I want to try and get pregnant & 2) I have ovarian cyst and I believe the pills are making the pain worse. I was diagnosed with PCOS in Jan of this year and have had myotonic dystrophy since 2007. Due to my conditions I have been told by my doctor that I am a high risk pregnancy and that the older I get it is going to be more difficult for me to get pregnant and the pregnancy is going to be a lot more difficult the older I get. So, I have made a decision that if I don't get pregnant by age 25 or 26 then we're not gonna try anymore because I don't want to risk my health and life or the baby's by trying when I am older. Anyhow, I know that I am going to have to stop some of my medication when I get pregnant which is not to big of an issue because I can still take my muscle relaxer for the myotonic dystrophy for the muscle cramps and spasms. My question is does anyone know of any tricks or easier ways to get pregnant with PCOS, I'm pretty sure the myotonic dystrophy won't effect my ability to get pregnant, but I'm not sure about the PCOS.
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PCOS is tricky. Some women have no problems ttc with having it, but others cannot conceive. (I have it, and it's a mild case and I am convinced it's a major problem for me.)
Are you insulin resistant? If so, perhaps you could ask your doctor about Metformin. (
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