Thick mucus

Perhaps your sleep position is aggravating an issue. Some of us sleep on our back or side but our upper body is elevated slightly. Sorry you are not getting much support from your hospital

Hi mate have similar issue 63 yo diagnosed with OPMD 10 years ago although they cannot find the faulty gene. Eyes and throat cause greatest issue people think l am drunk or drug taker Mucus at night becoming an issue need to be careful with diet.

Hi Brian I have recently been diagnosed with opmd, my symptoms were progressing fast before I got my diagnosis,I was advised by speach and language to have full fat fortified milk but I found this mucus forming and very stringy (I know gross),I also discovered that I probably have celiacs,by changing my diet my overall symptoms improved somewhat, unlike you I’ve experienced possitive experiences with my health team hope this may be of use , wishing you well Jeanette

Hi I got diagnosed last year aged 55,my eldest sister died in her mid 60s of this but that’s because she wouldn’t have a peg feed.i found what was wrong by joining the dots but I also helped to improve it a bit again by joining the dots.i have good days and bad days , for me getting through each day is a plus , eating out is a no no , I have a protein shake in the morning not to high in protein though , plus eating enough carbs is important ,to eat little and often . hope you find this a little helpful

Hi andyaa nice to hear from someone who understands what your going through,I too have siblings and cousins with the same condition,my dad also died of this condition,by doing my own investigations have gone on to a strict celiacs diet which has improved my symptoms somewhat.my neurologist was very impressed although symptoms flag a bit in the evenings , just take each day as a bonus.ifound that each of my family members symptoms varies as I’m sure you already are aware ,hope you’re keeping well crazy 🐈

Hello,yes they were able to identify the gene ,my father was 56.it wasn’t on his death certificate as cause of death but I’m very sure he had this as my siblings are half siblings,my father died in 1968.the findings for opmd varies in each family member you can have it quite mild and live to normal age

Thanks for your quick reponse 56 was way too young. Yes you are correct the condition seems to be very different in severity from person to person However, it is still a very unpleasant thing The other day l was walking around tge house bare feet because it was 35c here My toes became inverted and caused me to fall heavily and hurt my back Fortunately only temporarily.I learnt my lesson no bare foot walking. Does this happen to you. What about your eyes are tgey a problem? I have no contact with health professionals after my initial assessment by a professor. He came to my house and wanted to include me in his text books but really he could not help me it was more about helping hinself with his text books. Since my eyelid surgery l have to constantly use eye drops and gel. Severe eye infection is very painfuk and can result in sight slight loss so l am very xareful and even tape my eye shut at night sometimes. CN you walj ok my legs are very thin calf muscle has wasted and l won’t wear shorts I have been toying with toying with the idea of anabolic steroids to help muscles what do you think? I no they can be dangerous but so is muscle loss. Cheers

Haven’t you been seen by a neurologist.as for your foot problem,I have a hammer toe on once foot which is very painful,but in the last couple of weeks I have been getting leg pains.after modifying my diet my ptosis improved,my two cousins on the other hand have had eye surgery for this 3 times and now have trouble closing there eyes.going back to getting the right help you can see a genetic councillor, I’m currently being seen by speach and language and a dietitian and a gastroenterologist as well as a neurologist which have all been great I even had help with my mental health but that didn’t work for me so I took up painting instead much better,if you’re not getting the right help you need to become a cheeky gate until you get the right help , hope this is of some help

I live in Melbourne Australia.

You have a beautiful country . first off I wouldn’t take steroids without medical advice weight training would be a better option.when I first got diagnosed I tried creatin made me ill.i don’t know how much you’ve read about MD from what I’ve read the CK levels are raised so be careful doesn’t sound like you get much help there, as for wearing shorts only you aware of your lower legs anyway people talk to you not your legs and if they do notice then they’re shallow ,sad , let’s face it we are our own worst critic’s.