February 13, 2019 at 3:09 am #175437Unknown asymmetric MD
Am actually a Canadian but with strong UK routes. My grandmother was English and a war bride. Given that MD often has a gemetic component was hoping others may have a similar disease. I have an unknown form of MD. Disease really started being problematic in my early 20s and started with GI symptoms. Lost my hunger reflex. Can go for days without feeling hungry. I haven’t tried more than 3-4 days. Lots of hearburn, nausea and some vomitting. Symptoms progressed to severe muscle pain in my left shoulder girdle. Pain turned to weakness and muscle loss. Then I had pain, muscle loss and weakness in my left pelvic girdle mostly in my gluteusm muscles. Next muscle group were my sides and then progressed to breathing problems when lying down which points to diaphragm weakness and aspiration of stomach acid. I can no longer lay flat and my GERD is extremely severe even though it is treated. My N&V got so severe that I stopped eating most solid food. My CK has always been normal. Asymmetric muscle loss that seems to target a new muscle group every few years and walking has now become harder so is carrying objects. I fatigue easily and need to rest most day and only go out a few times a week if I am having a good week. I have done all the genetic tests available and they are unable to find a diagnosis. We retested for FSHD because of the asymmetry. Anyone have similar symptoms. I can give more info. Didn’t want it to get too long.February 16, 2019 at 6:38 pm #175568Reply To: Unknown asymmetric MD
You mentioned diaphragm weakness and GERD. Do you use NIV (non-invasive ventilation) at all? I used to suffer terribly at night with reflux and had to eat standing up when I was still able to. I went on to NIV at night and this did help as did my profile bed.
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: 05/03/2015February 17, 2019 at 5:41 am #175570Reply To: Unknown asymmetric MD
I’m still fine without any ventilation help. I have a wedge pillow I use when on the sofa and I have a mechanical bed. I also take the max dosage of PPIs and when I remember a swig of gaviscon. My GI issues were actually the fisrt symptom but I had struggled with GERD since 13 so it wasn’t apparent that my GERD, lack of hunger, then N&V, then aspiration and swallowing difficulties were iniatially related to the muscular pain and weakness. Very furstrating that all my doctora agrees this seems like a form of MD but nobody has ever seen this. Canada is rather small although we have alsp looked through the literature. Assume there must be other patients somewhere!February 17, 2019 at 9:58 am #175571Reply To: Unknown asymmetric MD
Hi,I to have suffered acid reflux for years when really bad I would get a burning pain on top of my right shoulder,I would cough in the morning and I would cough so much it would make me sick.fast forward a couple of years ago I developed a droopy eye lid and swallowing problems then last year I was diagnosed with opmd, before diagnosis I could only manage soup with a teaspoon, since then by going on a strict celiac diet my symptoms improved somewhat,all my health team I quite impressed, hope you might find some of this of interest wishing you all the bestCrazy catParticipantPosts: 0Joined: 27/01/2019February 18, 2019 at 1:06 am #175578Reply To: Unknown asymmetric MD
Unfortunately suffer from nausea and vomitting too that has progressively gotten worse so limitted to mostly liquid foods these days. I literally lived on mostly gelato. Safe food for me and keeps my weight above 100lbs. Also try to drink smoothies and eat stuff like yogurt but have to be careful because they are harder to digest. Various forms of potatoes also one of my safe foods as long as they are baked well or as a puree. I would kill for a salad or some real food.
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