August 10, 2019 at 7:57 pm #180238Just diagnosed with DM1
Hi all, this is my first post. Yesterday I received my diagnosis of DM1. I have 309 repeats of the faulty gene.
I’m 37 years old and the reason I was tested was that my father had heart failure then around the same time lost the ability to swallow. The neurologist put two and two together and he was diagnosed shortly before his death in January. My brother and I were tested, he was clear, but I have the condition.
I don’t have any problems with my hands, but my jaw does lock and I find it difficult to relax it. Mostly when I’m trying to eat or when I’m feeling anxious. I suddenly realise that its tight and it takes some effort to relax it properly. I have to open and close my mouth a few times! Could this be an onset of symptoms?
The other question I have, although a little morbid, is I’m trying to work out once the symptoms start, what kind of life expectancy most people have once the process begins. I have two young children, one who has special needs and for my own sanity, I need to figure out what sort of support I may need to put into place for him and when, as I’m a single mum.
My two children now may have the condition too. The geneticist said that children aren’t generally tested unless they are showing symptoms, but my ex husband wants to find out. Can I get them tested before they show symptoms of the disease?
Thanks so much for reading and for anyone who takes the time to reply. I’m a little lost right now but trying to stay positive.SunnyWarriorParticipantPosts: 0Joined: 10/08/2019August 11, 2019 at 12:45 pm #180243Reply To: Just diagnosed with DM1
I can understand your fears, you must be have a lot going through your mind about yourself and your family. Glad you’ve found the forum.
Regarding the jaw stiffness. I also suffer with what you describe and mine can lock when I’m super tired or stressed. After discussing with my dentist, I bought a dental jaw opening tool which really helps exercise and passively stretch those muscles. I’ll find a link and post it on here. It has helped stop the jaw problems occurring so much.
Back in a minute…
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas AdamsAugust 11, 2019 at 12:50 pm #180244Reply To: Just diagnosed with DM1
We have had some discussions about DM1 on here.
Also, if you haven’t already found this, there is a Myotonic Dystrophy info sheet
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas AdamsJune 13, 2020 at 10:38 pm #188231Reply To: Just diagnosed with DM1
Hi, I am in a similar situation. My husband and several family members have recently been diagnosed with Myotonic Dytstrophy type 1. We also have 2 young children and have been told they can’t be tested until they are 18. Did you manage to have your children tested? ThanksSallyFParticipantPosts: 0Joined: 13/06/2020
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