October 19, 2018 at 12:03 pm #163094Diganosed – MD DM1
I suppose I am fairly recently diagnosed with MD DM1. Went to the doctor’s about a year ago about my hands getting stuck in position when gripping, finally referred to a neurologist and after I mentioned that I had cataract surgery (unusual for being a 35 year old) he put the link together and after seeing a geneticist, diagnosis was confirmed.
Luckily I have the support of my lovely wife, but I find it easy to relate a lot of symptoms to MD, whether they are or not. Obviously the muscle stiffness, tiredness and balance issues are obvious, but being on other forums a few other symptoms have come up.
For instance, these days when I get the hiccups they do not go away – last time I had them for 48 hours straight! What about flatulence? I suffer from IBS so I thought that always down to that, but obvious gut problems can be attributed to MD too. The diaphragm and sphincter are muscles after all.
What do you guys do regarding alcohol? I still drink, just not as frequently as I’ve had a couple of bad falls after drinking.
Also, what about just apathy and lack of motivation? Is that just me or down to MD?
Any help would be appreciated!craig-dicksonParticipantPosts: 0Joined: 19/10/2018October 20, 2018 at 12:45 pm #163109Reply To: Diganosed – MD DM1
Hello and welcome Craig.An interesting set of questions there. As for the “gut problems” always remember you can have more than one condition at once, so you do not necessarily have them because of MD, it is possible but not definitive. I am sure flatulence is not s symptom that has occurred on the forum before.
Alcohol is not something I personally worry about. I am on so many meds now, most of which interact with alcohol that I do not bother with it. I am also somewhat surprised that you drink it when considering your IBS. Does it not make it worse for you?
Lack of motivation/apathy can happen to anyone. i will happily admit that it struck me hard when I lost both of my jobs as a result of my MD(I have FHSD). I thus had to get myself out of the doldrums and find something else to motivate me. Are you still working. I found that one of the greatest side effects of MD was the sense of being useless. Lost my jobs, and lost the ability to do many of the things that I was used to doing as a man. It can easily lead to depression if you are not careful. Have you any hobbies or interests to develop yourself?
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015October 22, 2018 at 11:29 am #163140Reply To: Diganosed – MD DM1
Yes I am still working, been in the same job for 5 years at the moment, I have always worked. I don’t think the MD really negatively affects me at work (not yet anyway). It is an office job so no hard labour :-)
Yes, alcohol does exacerbate the IBS symptoms, but it just means I allocate a few hours the next morning for trips to the bathroom and Imodium works pretty well for me.craig-dicksonParticipantPosts: 0Joined: 19/10/2018October 22, 2018 at 5:18 pm #163155Reply To: Diganosed – MD DM1
Flatulence and other Misc stomach digestion or swallow issues are very much part of MD although can also as always just be something else that everyone gets. People with MD can suffer from slow sluggish bowel motility so understandably if ‘items’ hang around too long excess gas/good bacteria is made in effort to break it down. Which is essentially what IBS is.
Hiccups in myself is a reflex action normally prelude to acid re-flux due to bad posture.
Drinking can make worse especially carbonated soft or alcoholic drinks. Everyone is different I find the occasional Brand or gin helps the stomach process. All in moderation.
Your GP should be able to sort you out with something for the hiccups. They are a sign of digestion problems. and some organ issues in very rare cases. The most likely cause is your stomach isnt closing properly and letting some stomach acid flash back and irritating the throat. the body closes windpipe to protect the lungs and causes the hiccup sound effect.
Have you tried pro biotic for the gas?
"""""""What doesn't kill you makes you stronger""""""Cat (Mod)ModeratorPosts: 1,002Joined: 20/09/2010October 26, 2018 at 11:33 am #163268Reply To: Diganosed – MD DM1
Hello Irish Colin, welcome to the forum. Lots of folk on here would be more than happy to chat with you. Please let us have some more details. What sort of MD have you got, are you facing any problems, how are you getting along etc.Most importantly what do you perceive is happening to you as your condition is worsening you say. What help are you getting?
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015April 17, 2019 at 9:48 pm #177197Reply To: Diganosed – MD DM1
Craig – in answer to your initial question I have a few thoughts. I have recently been diagnosed with type 1 Myotonic Dystrophy myself and I am also still working although finding it emotionally tough (I am a GP & would love to be in a job which I find a distraction but unfortunately that’s not the case)
Just wondering if you’re under a specialist centre with your myotonic dystrophy rather than just a local neurologist. I am awaiting an appointment with the myotonic dystrophy clinic at Queens Square in London – my understanding is that they have a whole team of sub-specialists there that can look at things like your gut (is it IBS or related to myotonic dystrophy?) & also I imagine they have psychologists or psychiatrists linked with the clinic that can help you get to the root of things like apathy.
If you’re not under a specialist centre I strongly suggest that you speak to your GP or neurologist about being referred to one.
Hope this helps.
Genevievegenevieve17ParticipantPosts: 0Joined: 13/04/2019April 18, 2019 at 7:13 pm #177222Reply To: Diganosed – MD DM1
Hi everyone, I’ve noticed that most of you mention, stomach problems,I to have suffered stomach problems mainly,acid reflux.before my diagnosis of opmd my swallowing was getting so bad that I could only manage soup with a teaspoon.after suspecting that not only was there a family history of opmd but also either celiacs .I don’t eat any wheat glutens or other grains,since changing my diet my swallowing improved considerably I have no more flatulence still have a little reflux.of course I’m not advising anyone to change their diets but it might be interesting to see if there’s a connection between celiacs and mdCrazy catParticipantPosts: 0Joined: 27/01/2019
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