January 10, 2011 at 7:57 pm #75884Re: Say “hello” here
Hello to all
I have, 2 months ago, been visually diagnosed with Facioscapulohumeral dystrophy, FSHD. I have had my blood taken to do a genetic test and I am currently waiting on the results. Eight days and counting.
I unconsciously realised that there was something wrong if that makes sense, but because these symptons didnt really affect me in any major way I didnt bother having anything done about it and put them out of my mind. My first inkling was when I was 13 or 14 when my shoulders began to slump forward and I developed bilateral winging of the scapula, but because it never affected me to any noticeable degree I never thought anything of it. I was always very active when I was younger doing all sorts of sports from rugby all the way through to tidllywinks. I am a relatively private person when it comes to medical problems so I didnt really say to anyone about it. Nobody said anything to me about it either, I think because I did alot of sport people just thought I looked muscular.
The first time it was mentioned was when I was in a car crash when I was 15. I had to go for a medical assement for something to do with getting compensation. I had to put my arms out in front of me and raise them above my head. I could manage about a 120 degrees and my scapula stuck out, quite a lot. The doc who was doing the assement commented on my scapula. I think his words were “Ooo that is intresting” and nothing was mentioned again.
My sloping shoulders and “wings” were the only indication I had FSHD untill recently. I am now 32 and it feels like in the last few months things have rapidly got out of control and taken a turn for the worse. My shoulder blades stick out so much that even the most hardened redbull drinker would be jealous. I can now only rasie my arms about 45 to 50 degrees in front of me and about the same to the side. I can just about pick up a coffee mug, but when drinking I have to support my arm with the other hand. This sucks as I like to drink lots of coffee. I have constant joint ache in shouldes, elbows and knees. I have always had the odd twinge but never this bad. My upper back muscles, whats left of them, constantly burn as do my neck muscles and biceps.
I am at the beginings of getting foot drop. I have started to trip up over nothing and taken a few tumbles. These tumbles always seem to happen when I am in a crowded place or walking past a nice young lady or when the ground is hard. Now why is that? It is never at home on the nice soft carpet in front of the cat!
My face muscle are only slighty affected. Drinking through a straw is quite hard and I used to be able to whstle quite well, not so any more. I also tend to wake up with my face encrusted with drool. Hmmm attractive!
One thing that totally suprised me was the levels of fatigue I am experiencing. I tried to tidy a room in my house the other day and it felt like I had done a solid twelve hour shift on a building site. It has taken me three days to get over it and recuperate. I am not one for asking for help but now I dont think I really have much choice.
I dont think I have ever talked/written about myself so much in my life. Thanks for reading.
WWwingedwarriorParticipantPosts: 67Joined: 10/01/2011January 10, 2011 at 9:29 pm #75882Re: Say “hello” here
Welcome wingedwarrior. It is hard to deal with everything and I’ve had the similar experience of rapid deterioration, tidying up is harder. It’s good that you have written so much, I think it helps if you can “talk” to people and this is a good place to do it. Questions, rants, whatever, use the board, you’ll get a lot of support and help and of course, more importantly, understanding of what you are going through.Paul58ParticipantPosts: 85Joined: 05/10/2010January 11, 2011 at 3:08 pm #75885Re: Say “hello” here
Welcome Saniyah, Laylagirlxx & wingedwarrior to TalkMD, I hope you enjoy your time here and find it informative and friendly!
Saniyah, driving is the only way I keep mobile and I would reccommend it to anyone who thinks they can do it.
The details in Catdudes post are very helpful.
SagSagarParticipantPosts: 82Joined: 20/12/2010January 25, 2011 at 9:24 am #75891Re: Say “hello” here
Thanks for the welcome.
Just to let you know something about me, I have a lifelong progressive muscle disease which has always been difficult to diagnose fully or accurately (I’ve had a number of different diagnoses down through the years), but which falls under the big umbrella that gets labelled as muscular dystrophy. I work more or less full-time in publishing, which keeps me out of mischief. Sort of. Mostly. I’ve also been, in a way, a carer, as one of my daughters has what seems to be the same or a very similar condition. She’s now in her 20s, and again doesn’t have a definitive diagnosis.
So between us we have many years of living with and attempting to deal with the condition. It’s always good to know that there are others out there who can share experiences and support. And have a good therapeutic moan from time to time!peteredParticipantPosts: 564Joined: 24/01/2011January 27, 2011 at 8:27 pm #75893Re: Say “hello” here
My name is Carl, just hit the big 40!! apparently life now starts .
Have lived in Essex,Suffolk my whole life.. was diagnosed with Beckers at the age of 16, after a muscle biopsy when i was a little younger.. then after further tests on my frozen muscle about 10 years ago i was officialy told that in fact i had LGMD2I. Basicaly i believe the symptoms are very similar, but the genetics are different as is the protein mutation, i lack the protein Fukutin wich strengthens the muscels.
Thats a quick summary of myself, if anyone has any further questions fire away im very open and am willing to share experiences etc…
Take care Carlfandango32ParticipantPosts: 7Joined: 27/01/2011January 29, 2011 at 12:50 pm #75898Re: Say “hello” here
I figured it was about time I joined in this growing community!
I’m Jon, I’m 29 and have Duchenne muscular dystrophy. Technically it’s “intermediate” Duchenne, but they seem to have just made that up because I was walking a bit later than normal (finally stopped at age 17, although by that time I was probably only walking about 50 metres, in calipers).
I live in Worthing, West Sussex, with my parents, and use a voluntary organisation to provide carers. I have been to university and completed my Ph.D. a few years ago. I now work part-time at a disability organisation in Brighton conducting research on the needs of disabled adults in the city. I try to keep up-to-date with campaigning, and I’m currently working on a documentary film focusing on adults with Duchenne.
Look forward to chatting with you
JonjonhastieParticipantPosts: 7Joined: 03/01/2011January 29, 2011 at 3:25 pm #75900Re: Say “hello” here
I did’nt see this thread when I first posted, I better say hello.
My name is Gerry and I was recently diagnosed with a heart condition that weakens the heart muscle (Dilated Cardiomyopathy). SInce diagnosis I saw a link between the cardiomyopathy and Muscular Dystophy. This was only a few weeks ago. The penny suddenly dropped. I have all the tell tale symptoms of MD, including huge calf muscles, waddling gait, gower, weak thighs, poor exercise tolerance, cramps etc. Anyway to cut a long story short, the cardiologists have decided to refer me to a neurologist to diagnose the MD but I suspect it to be Beckers MD or possibly Limb Girdle, but I’ll see what the Neuro has to say. It comes as a shock even though the symptoms have been staring me in the face for years without me or anyone else noticing. Or at least not acting on it. I did a blood test yesterday to check my CK levels, so I hopefully will get news on that shortly.
Thank you for listening
GerryDCMGerryParticipantPosts: 13Joined: 16/01/2011January 29, 2011 at 6:09 pm #75901Re: Say “hello” here
Hi Jon, have I come across you somewhere before? Good luck with your documentary – something that needs doing!
Hi Gerry, you are not alone when you say that things crept up on you, I have read other members’ posts saying similar things. Let us know how you get on with the Neurologist.
Welcome to you both!
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: 05/03/2015
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