May 17, 2020 at 11:46 am #187820New OPMD Diagnosis
I have recently been diagnosed with Oculopharyngeal Muscular Dystrophy and I’m having some difficulty in coming to terms with it. It is rare and I’m struggling to find any information about it. It has taken 7 years to get this diagnosis since my first symptoms appeared which has been a very frustrating process.
Does anyone know of any in depth studies on this condition please? The link on this website is broken. I’m desperate for information and feel like I’m beating my head off a wall.
Thanks in advance.
LisaMay 17, 2020 at 12:44 pm #187822Reply To: New OPMD Diagnosis
Hello and welcome. You are not alone in your struggles, most of us here have gone through the same difficulties regardless of the brand of MD we have. But please be assured that you are not alone, we are here to help, to listen and to support.
There is a wealth of literature out there, mostly designed for non medical people. Would you prefer to have medical papers as opposed to the information for lay people? Now you have your diagnosis has your neurologist pointed you in the direction of any support or ongoing care?
So many love songs, so little love.May 17, 2020 at 12:52 pm #187823Reply To: New OPMD Diagnosis
Thanks for your reply. I would prefer something for the lay person to understand but anything at all would be good, I can’t find much at all on OPMD, maybe because it’s rare? Who knows?
It does feel very lonely receiving this diagnosis, especially at this time when I am unable to see the neurologist in person, I have a telephone appointment with him tomorrow to see where I go from here so I hope he can point me in the right direction.
I have so many concerns, especially the hereditary nature of this disease and how it could affect the rest of my family, I worry for them too.May 17, 2020 at 5:08 pm #187824Reply To: New OPMD Diagnosis
Hi Lisa. Sorry to hear you are struggling. My name is Jeanette I too have opmd I have been where you are right now and it’s like being hit by a freight train worst feeling in the world.but I’m dealing with it much better now. There is genetic counselling, although I have not done that yet. I have one son who had the test which came back negative thank god. I inherited it from my dad which means it’s dominant which is only one copy of the gene. You don’t say what type you have. Write down as many questions to ask as you can.. CcMay 18, 2020 at 8:23 pm #187888Reply To: New OPMD Diagnosis
Thank you for your response, it’s just good to know I’m not alone, it certainly helps. I had my telephone appointment with the neurologist today and he’s managed to put me at ease a great deal. He’s referring me to to a surgeon to get my ptosis looked at and also to a genetic counsellor. Of course none of these things can happen during this pandemic which is very frustrating but understandable.
Thanks for listening
LisaMay 18, 2020 at 9:36 pm #187889Reply To: New OPMD Diagnosis
Hi Lisa,I’m glad they’ve put you at ease. There are people you can call at md. And they can send you an information pack about the condition. It takes time to get your head around it,there peers on here that have the same condition that you will be able to help with your questions. It will get easier and there will be good and bad days.ccMay 19, 2020 at 8:37 am #187891Reply To: New OPMD Diagnosis
Hello Lisa, totally understand your frustration , I’ve just recently been diagnosed with inherited distal myopathy and still awaiting further testing for limb girdle muscular dystrophy.
It’s reassurance when you’ve spoken to your neurologist and you know your going to get support .
I don’t think any time is a good time to get told these things but when in lockdown it’s definitely testing.
Take care TracyTracyallcock7ParticipantPosts: 0Joined: 06/01/2020May 25, 2020 at 12:41 pm #188023Reply To: New OPMD Diagnosis
Perhaps you might start by looking at this
If you have already seen it I will paste some more.
So many love songs, so little love.October 3, 2020 at 1:25 pm #190047Reply To: New OPMD Diagnosis
Hello all. My genetic counselling has been delayed and delayed due to Covid-19 it’s so frustrating. However I did have some tests done on my muscle function and apart from my facial and throat muscles everything else is OK at the moment which is a relief.
Thanks for your responses and support.October 5, 2020 at 8:52 pm #190070Reply To: New OPMD Diagnosis
Hi Lisa, it is speach and language therapist, I too have opmd and have seen the salt team, they check your swallowing and give you exercises to do and some good advice, I too am waiting to see a genetic councilor, I don’t expect that will be any time soon. I also saw a dietician.ccJuly 31, 2021 at 9:23 pm #202227Reply To: New OPMD Diagnosis
Hi there! This is my first post on this forum and website I was just diagnosed as well (In May). I am 55 years old and have dysphagia and ptosis. I belong to a couple of private groups on Facebook. Lots of discussions there. I am French Canadian and well educated on this disease, which is very prevalent in my family. I’m here if you want to talk.canuck102ParticipantPosts: 0Joined: 31/07/2021July 31, 2021 at 9:27 pm #202228Reply To: New OPMD Diagnosis
Hi! I am recently diagnosed as well. I have a question for you: Do you have mucus when you eat? Every bite and sip of anything I ingest creates a ton of mucus that I must spit and or cough. It is very embarrassing and my social life is suffering. I am afraid to go to a patio and have drinks and food with friends and acquaintances.canuck102ParticipantPosts: 0Joined: 31/07/2021August 8, 2021 at 5:30 pm #202235Reply To: New OPMD Diagnosis
I too have problems with excess mucus. I think there are meds that help reduce it but I haven’t yet gone down that route. What I have started doing is changing my eating habits. I had reduced my dairy (not completely) and I do believe it’s helping. I read somewhere that dairy doesn’t increase mucus in itself but does cling on to it and thus you feel it’s harder to get rid of. I also have weak swallowing muscles and am under the support of my local SALT team (Speech & Language Therapy).
I completely understand how self-conscious you feel when out with others. It might help to make a diary of when it’s worse and what you have been eating and drinking? Or whether the pollen count is high?
Hope you find something that eases what you’re experiencing, keep us posted!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015August 16, 2021 at 8:57 pm #202248Reply To: New OPMD Diagnosis
Hi, canuck I too have opmd, I’m English this runs in my family I inherited from my dad. I also have a mucus problem like you dairy is a problem so is sugary things especially chocolate. Drink plenty of water helps and black coffee. I was given a diet sheet from speech and language. They also suggested mouthwash. My swallowing has got worse so the consistency of my food is that of a baby. So eating out is not an option, just a drink. And yes embarrassing but very scary. Cc
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