Intl Myotonic Bulletin Board

Such a relief!

SueW — Sun, 31 Aug 2008 19:41:26 GMT

Hi everyone. I am new to this site and so excited to be able to communicate with others who may understand how I feel. My father had myotonic dystrophy, diagnosed when he was 52. I was 10 at the time and my life just revolved around my dads inability and intense stomach pain. He passed away at 69 in 1984. I only knew at the time that it was muscular dystrophy and really didnt know much about it apart from what I saw in my dad. My sister is now 53. She was diagnosed about 10 years ago with myotonic dystrophy and all her ailments now make sence. It has caused me a lifetime of deep depression as I was the prime carer for both my dad and my sister until my sister got married. I am now 50, with 2 teenage boys. Last week my sister's husband suddenly died and now I am a carer again. My sister has many health problems both physical and mental. However she is really bright in many ways and has a photographic memory. I now feel so guilty that she has been misunderstood all of her life because we didnt realise all the implications of this disease. I am so lucky that I appear not to have inherited this terrible disease myself and therefore have not passed it on to my boys but I would love to talk to someone who may have suffered similar experiences because it really has affected my whole outlook on life.

Hi'a all

yungran48 — Wed, 20 Aug 2008 18:38:45 GMT

Hi to everybody from sunny Kent. I have Myotonic Dystrophy. Came from my father and sadly my son got it from me. He was congenital and passed away three and a half years ago at the age of 7 1/2. None of my three daugters have it so no grandchidren with it. Not too bad at the moment. Hope to hear from other people Take Care Alison

Hi All

Gleezle — Wed, 20 Aug 2008 18:00:11 GMT

Just saying hello to you all out there from Kent in the UK, decided to get in touch with the great big world of DM outwith the shores of GB.I'm Scott, originally from Scotland, but i got dragged kicking and screaming over the border to England by my partner Alison about a year ago.
I'm 45 and Ali is , she has MD, but at the moment things are going along not too bad.
Anyway that's my big hellooo, and i hope to chat soon. Scott

Speach Impediments

Mwarren — Wed, 20 Aug 2008 15:20:23 GMT

My granddaughter is 5 and has come along way with her speech-with entering kindergarten her speech is difficult for strangers and sometimes me to understand-Has anyone researched surgery for air passage movements or found other options

Worried about having children...

bettybrite — Wed, 13 Aug 2008 20:50:39 GMT

Hello

I am new here. My 36 year-old brother was diagnosed with myotonic dystrophy a couple of months ago. He's had some symptoms since his early 20s but never put them together. I don't know how many repeats he has, but his condition seems to be fairly mild.
I am 31 years old and have a 6 year-old child. I was just about to try to get pregnant for a second child when we found out about the disease. No one in my family shows any sign of it (we don't know if my mother or father passed it on, but it's probably my mother, because of the region she is from). I have no symptoms either, no myotonia, not a big sleeper, very expressive in the face, and my first pregnancy and delivery were very easy.
I'm getting tested on friday because I really want to have another child. But I'm very scared, I fear that if I carry the gene, I will have to give up on that dream... Not only for medical reasons, but because I am scared it could "activate" the disease for myself.

Does that make sense? Should I be reassured by the fact that at 31 I show no signs of it whatsoever (except, of course, that I imagine all sorts of symptoms now that I know it exists...)? Does anyone else have lots of anxiety due to this? Have any of you "imagined" symptoms (knot in the throat, fear of being slurring when speaking, fear of heart problems) when you found out someone in your family has it?

Oh, I hope that if I have it, I will have the courage to face having or not having, another child...

thank you for reading

Frances

can i be a carrier

shaz32 — Mon, 11 Aug 2008 19:44:24 GMT

hi there i'm pretty new to this site my mother had myotonic dystrophy and sadley passed away at 54 my brother alsos has the condition and is practically wheelchair bound from the age of 35 . when we first discovered they had it i was told i may not have the condition but i could be a carrier now i'm being told that i haven't got it and it's stopped and can not be carried on to my children or grandchildren if anyone knows i would be very greatful xxsharonxx

boyfriend

fugiiapple — Tue, 05 Aug 2008 20:28:31 GMT

all i've read is really bad things about mmd... My boyfriend has mmd, and didn't tell me for 2 months what he had when we first started dating, then dropped the bomb......he was affraid i would run for the hills before i actually knew him. But as i've gotten to know him, he is the kindest and most gentle man i've ever ment......i've decided to continue seeing him, we have been dating for 9 months now.....i'm affraid of the future and what it will bring, he doesn't seem to have change much and i'm not sure what his count could be. i am 41 and he is 35 he's lived with for the past 8 yrs.....he wears leg braces, has propblem swallowing, and takes that pill to stay awake, although he doesn't take it on weekends and he seems to do okay. i would like to know if i am just setting myself up to go into my old age broke, a nurse to my spouse, and isolated frm everyone? is there hope? I don't plan on having any children, never really been interested in it.......

New Subscriber

littalone — Mon, 04 Aug 2008 08:13:31 GMT

I have just recently lost my mother to Myotonic Dystrophy at the age of 69yrs. She inherited this condition and lost her sisters and brothers to this condition also.
It has never been a secret in our whanau/family and we have lived through this terrible disease and watched our family members nursed right through until they passed.
I guess I have registered to this sight to hear about other stories and how they are supporting there loved ones and how they are coping and of course the different symptoms you are are experiencing. I am really trying to understand why there has not or better said IS NOT a cure for this condition.

should i get my children tested?

gemma — Sun, 03 Aug 2008 17:53:58 GMT

My usband was diagnosed about 6 years ago with mytonic dystrophie.

I have a 6 year old and a 2 year old that are showing no signs of having it.

does anyone having any ideas if iu should get them tested or not? and if so why?

thanks

Gemma

I think my grand-daughter has CMD, but I am not affected is this possible?

grace1 — Wed, 30 Jul 2008 00:31:36 GMT

We just found out that my sister and brother both have MD, so do several members of my family. I think that my 1 year old grand-daughter might have CMD, she has most if not all of the syptoms.

Baby

Maryjane — Sun, 20 Jul 2008 14:37:39 GMT

Good Morning Everyone. I have good news this week. My Granddaughter had a beautiful baby girl this week 9lbs 8 oz. This is her second child. Neither seem to have Myotonic. We know for sure the3 yr.old does not. My Granddaughter,her Mother & Grandfather all have it.It is a 50 50 chance to take. It has been a miracle to me.
Maryjane

New

afrancis65 — Mon, 14 Jul 2008 20:50:40 GMT

Hello:

My husband was recently diagnosed with DM1. Since the age of 15 he has worked out. He is now 45. Building muscle has always been a huge part of his life. We had no clue that he had this disease but we knew something was wrong when his left bicep started to atrophy.
As a spouse of someone with this disease I would love to hear from others who could offer me advice on being the best I can be for him. What do you say? What do you do? For those of you with DM what have you found that was helpful coping emotionally?

Thanks,
Angela

Did KARATE for 10yrs and haven't worked out in 8yrs

earthstarr7 — Thur, 10 Jul 2008 17:10:27 GMT

i was diagnosed with myotonic contractions when i was a little girl. I saw a neurologist and they ran a bunch of tests on me. couldn't find any abnormalities in my, my mom's, or my dad's dna. I started practicing karate with my father at age 6 and stopped at 16/17. i always had to be really warmed up/ strecthed out in order for the cramping not to occur. i have not done any type of excercise since and my muscle definition/ body seems to be intact (i'm assuming that its because my muscles contract daily). i definitely still get the muscle freezing/ cramping though. does this still mean i have myotonic distrophy?

i'm 24 now and still have the same problems with the contractions. I definitely notice them more in colder weather. I have a huge fear of infertility because of this. i just had my first wedding anniversary and am desperately trying to conceive.

What does the future hold?

chewyhoney — Fri, 27 Jun 2008 12:44:49 GMT

My son is 2 months old. He was born 3wks premature. He was in the nicu for 10 days. He was on a vent for 4 days. I just found out he has 776 repeats. What does this mean for his future? I am so sad and scared. I looking for hope.

uncertain future

spatter61 — Wed, 18 Jun 2008 20:33:25 GMT

Hi,
My son is 26 and was recently diagnosed with MMD. He was diagnosed with narcolepsy a few years ago and recently developed myotonia in his hands. He also has ptosis, the long thin face and frontal balding associated with this. As a mom I am understandably concerned with his future and frustrated with the lack of specific information I can find. Are there any good books or other information? Also, I am wondering if his narcolepsy will worsen as the disease progresses. If you have any insight I would be greatful.