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So sorry me again!!!!
Hi, I seem to ask all the questions! Im so sorry. I’ve had this weird thing happen twice in the last month- choking on my own saliva. The first time I thought it was just a fluke but it happened again today. The weird thing is obviously this happens to everyone sometimes… but…..I inhaled just a tiny amount and my voice was very quiet after for ages like I could not get it out?! And I felt like my throat was a bit blocked. Weird. Hoping its not lgmd related and its just me being weird!anyone get this?
Reply To: So sorry me again!!!!Hello Me Again. Wonderful to have you back, even under these circumstances.Yes we have all been there, myself this holiday period, and it does traumatise you (well me at least) for quite a little time, that trauma affecting you vocal cords, especially if your saliva is very sticky. It may well be one of those moments, but a quick look at symptoms for LGMD suggests that it could be as a result of your condition now.
May I suggest for now that you. keep an eye on it, especially if you have other episodes, then if so report the matter to your GP, who can point you in the right direction. If there are no other episodes, then be happy and move on.Mike
So many love songs, so little love.
Reply To: So sorry me again!!!!HI pips
Aspirating food, drinks or salvia is common over MDs. It can be due to our standard cough being weaker. Everyone can have food, drinks or saliva go down the wrong way but able bodied people without MD often have better cough power to effectively clear it.
Your GP could maybe refer you to a speech and Language specialist (SALT) to have a look at your swallow technique and maybe Ear nose and throat. Always a chance issue is non md related.
People with MD often have shorter pallets in mouth. Enlarged tonsils and bit less throat muscles power. Try taking slower smaller sips or bites. chew well and watch posture is good when eating and drinking. Try not sitting back or laying down to drink or laying down.
I find milk increases saliva and causes choking episodes.
Reply To: So sorry me again!!!!Hello Mike and Cat…and thank you so much for your advice! I will keep an eye…..and speak to GP if it happens again. Very strange. I have definitely noticed a sharp decline in the last 6 months….or rather, those points when we lose some of the things we could do before so it feels like a massive drop but it is, in fact, a lost ability that has taken take to go. My dad lives on a boat and I was able to get on it in the summer. But this last week I had to be lifted on. Good job I dont often frequent boats
how are you both during this mad time? I am shielding…..again…..still……but lucky to be able to be at home.Reply To: So sorry me again!!!!Hi pip,
I read alot of your posts and see you was diagnosed at 35 with lgmd
I have had a biopsy nearly 1 year ago and am awaiting results.
On electrical test nuro said looks like lgmd.
CK high between 5000 to 17000
I can’t run no more like you and need handrail support when climbing stairs, can’t stand up riding a bike either but apart from that look normal.
If possible could you tell me the changes and time frame you have noticed ect ect.
I just don’t understand this, we are born with a defective flaw in our dna from day 1 so a part of are makeup is flawed.
But why did it function so well flawed before we get to muscle breakdown?
I was the fittest in my school, I left school and joined the marines In which I served 5 years and was one of the fittest there. I could out run and outlift most.
We had to carry 40kg + for days across mountains
So why did my body work so well, even at elite level better than others with a defective dna flaw but now decides to break down
Reply To: So sorry me again!!!!Hi Joe,
It sucks doesn’t it? Sounds like you were mega fit and must have had some gruelling adventures in your previous career! Well done. I can see that it would be so much harder to go from that extreme to this. I have never been very strong or fit. I think my symptoms were mildly there as a 10 year old who couldn’t keep up in PE and then at secondary. When I left school and thought I was just not sporty, I decided i actually enjoyed keeping fit and the gym. I was never able to extend my stamina or strength much at all. I taught myself to run aged 22 and loved the freedom of it, but only ever managed a few miles at best. I also spent my 20s exhausted and being told i had chronic fatigue syndrome. But all the while I had this very raised ck and odd looking biopsy result. Yet. The drs couldn’t see any weakness. I could feel it through exhaustion. Late 20s, kept falling over. Early 30s realised i had stopped trying to get into a run. Realised i would struggle to run if I tried. Now, the difficulties and exhaustion of climbing stairs etc is much more pronounced and the clinicians can ‘see’ the weakness now. But still, mild clinical appearance. However. They have advised me to use a power chair or scooter for long days out to reduce exhaustion. Im yet to do this. I still go on two hour family walks, and last summer I did some arduous walks in the Derbyshire peaks. But it felt like o was climbing snowdon in ice conditions, and then 4years olds overtook me and I realised I had taken on too much. I have realised that I can’t ‘correct’ my waddling gait anymore (it makes me feel like a pirate and I used to test how bad it was by pretending I was walking in to a job interview and trying not to do it). When I’m walking a slight incline I am slow and can’t speed up no matter how hard I try. I always nod off after a long walk. I no longer do anything which makes my muscles burn and leads to severe pain, because I think I actually can’t push my leg muscles that far anymore. They went from years of pain to a gradual feeling of nothingness. I get up my stairs at home but reasonably slowly and with the f word with each step!
I dont understand the science behind it either. I dont get why your muscles could recover and grow but now can’t. Sorry I tend to ignore reading about the medical reasons for it all as it blows my mind. And annoys me. I also feel like I never really built muscle and everything I did to try just exhausted me. I had large calves and thighs for a long time but they were relatively useless. Now they’ve shrunk a lot and are more useless.How long have you had symptoms for? Perhaps Mike or Cat can direct you to more reading regarding the how and why? I did not have my subtype diagnosed until I had my genome sequenced. I was told I likely had MD in my 20s though.
You are still strong. I know it helps very little but try to hold on to other types of strength- emotional and strength of character are clearly also areas built on in the marines. Pip
Reply To: So sorry me again!!!!Hello Pip and Joe. I am no expert on these matters, but can I give you a few thoughts to try and understand why.It takes an immense amount of knowledge and understanding to know what goes on. That is the problem, we do not have the immense amount of knowledge and understanding to know what goes on. Yes we have lots, but there is still so much more to know.
I would also ask you to think of our bodies having not just the patterns encoded in our genes, but also having our vein and thus the rest of our body, filled with a soup of co many different cells, and constituents, that vary not just over a short period of time but over long ones too. For example I was not diabetic when I was young, and it was to lef to my forties to find too much sugar in my blood. Now how does that sugar affect the other constituents of my blood and body. Some are know, some, probably so many more, are not. Roughly speaking then we need to know far more about people for us to even begin to answer the question of hy things didn’t start at birth. Perhaps they did but the changes were so very small no one would notice.Mike
So many love songs, so little love.
Reply To: So sorry me again!!!!Hi all and happy new year,I do a lot of googling, into my md, which is opmd. All I’ve found is that different mds start at different ages, and certain mds affect family members more or less severe. Wobbly legs makes me feel like I’m a 100.i too have blood sugar problems, prediabetes. I also have a hiatus hernia, which is getting worse, as for sports I was hopeless at school but in my thirties loved the gym but was never any good at running but like was mentioned climbing stairs is a struggle bending to do things also a struggle which end up with jelly legs, tried exercising which causes pain even only for a few minutes, still waiting for genetic councilors to get answers, it’s not just our limbs that are affected what about all our internal muscles, which explains, stomach problems which may intern have a knock on affect, may contribute to nutrition and diabetes. I also cannot touch wheat or gluten makes my symptoms worse, don’t know if this rings true with any of you hope this may help. Jeanette
Reply To: So sorry me again!!!!Thanks for all replies.
Regarding diabetes I think it will be a issue at some point for all MD types due to lack or being not able to be physically active.
I agree also with internal muscle issues ect ect
Looking over it my life has been great, as a child I boxed at a high level. left school at 16 and joined the marines, spent 5 years mostly out the country on active back to back operations even working along side special forces was amazing lifestyle
Left and got another job which I had to be very physically active in and got to travel the workd living in various countries. Between this contracting work I would travel off grid for weeks on my own and do alot of hiking in Africa, central Asis and East Asia.visited over 60 plus countries
Had a few relationships where I would end up living in other countries.
My fitness was always my priority, if I was in a hotel I woukld do a press up, sit up squat routine.
I could never keep still.
I even rode a motorbike from England to Asia on my own just sleeping in a tent on remote off road tracks, I trusted my fitness shoukd the bike break I woukd just walk out be it 30 miles or more.
My fitness was always there, now looking back on it in basic commando training my step was slightly out on speed marches, i had a stand up jet ski which my legs woukd hurt alot.
I woukd do seated leg press rather than squats, I slowly stopped running and sub consciously with out knowing avoids leg exercise.
Reply To: So sorry me again!!!!Since my biopsy I have had only a preliminary report which confirms a muscular dystrophy; special stains awaited to try and identify which type.
As ned Kelly once said….. Such is life
Reply To: So sorry me again!!!!Hi Joe. It sounds like you have really seen the world as it should be seen, not in some holiday resort. But even that’s still nice. Hopefully we will all be able to tothat again soon. I as my half sister would say I went looking for it. No I just joined the family dots.I’ve inherited it from my dad he died in 68 at 56 years. Wasn’t listed on his death certificate but diabetes and anemia was they didn’t know anything about it back in the sixties, so as far as I’m aware the diabetes and other nutrition issues there is a definite link with md conditions it runs in my family, so maybe it’s worth asking about your family history if you haven’t already.
Reply To: So sorry me again!!!!Hi pip, just wanted to say I aspirate so have to be very careful when eating and I wake during the night choking on my saliva very stressful, my voice gets weak which is caused by my opmd. I don’t sleep much tired most of the day, salt team said there are things you can take to help reduce saliva and said certain drinks may help like red grape juice, also there are exercises they give you to improve throat and tongue muscles, not sure if there’s a gym for that,
Reply To: So sorry me again!!!!Yes I am classed as high risk for diabetes on my blood test.
I am planning on a strick diet routine starting today,
If it’s type 2 diabetes we are at risk from then if we eat a strick diet it is reversible
I also spend hours researching and it states this
Currently echo cardio on heart is fine
Also it’s worth everyone asking for a liver function test when they get bloods checked as high ck somehow leads to high liver function results
Reply To: So sorry me again!!!!Hi Joe,before I got diagnosed with md several times my blood test results came back with raised liver enzymes and had ultra sound twice which showed fat infiltration on my liver and 2 or 3 times was prediabetic, I’m vegetarian, non smoker and don’t drink alcohol. Only slightly over weight, finding it difficult to exercise even tweeking my diet I’m struggling to lose weight.
Reply To: So sorry me again!!!!I am not diabetic or pre-diabetic. Yet. But my body doesn’t enjoy gluten too much. My mum was coeliac later in life so I’m waiting for that….
The first bloods which showed abnormality were routine liver tests in pregnancy. I’ve always got abnormal liver function but i’m told this is not anything in and of itself as it can be explained by high CK levels which the liver has to work hard to process. It doesn’t indicate any kind of liver disease. Joe- I wasn’t given genetic diagnosis until I did the genome project with the NHS- and that took 2 years or more. Plus, I travelled to the Newcastle clinic for more opinions prior to that and still no diagnosis. Even now its a best guess based on the genes. For this reasons and many others, I don’t entirely trust that drs know every thing about my condition. for instance, I have issues with pain in my tongue- it interests them, but they don’t seem to think it fits with my mild presentation. They dont really listen when I mention things about morning headaches, heavy breathing when flat, palpitations- yet I feel they may be pre-symptoms, like the muscle weakness i felt but they couldn’t see for years. CrazyCat- I spoke with the specialist physio who works at Wessex neuro centre and sees me each appointment, and she doesn’t see any reason for me to aspirate- again, with mild presentation. I mentioned the tongue hurting when i try to cough and clear my throat and she just kind of ho-hummed. But…..\i did this for years and they put everything down to ME/chronic fatigue syndrome. They even told me it was depression related. NOW they say its definately MD. They can only diagnose what they see and what the textbooks tell them to look for, and a bit more when theyre very clever….! They HAVE said it would be worth me buying a scooter for long days out etc…..so thats my next set of questions Ill be firing at you all! I want an off-road thing that can get me back out in the forest where I live! I sense that may be well out of my price range! Reply To: So sorry me again!!!!Hi pip,I wasn’t diagnosed with celiac disease but my neurologist said a negative test doesn’t mean I don’t have it, also need to be consuming gluten to have further tests because of what it does to me I cannot afford to do that. The full name of my condition is ocular pharyngeal muscular dystrophy. It causes drooping of the eyelids and swallowing problems throat weakness I also have limb weakness and pain. I did get pain in eye and jaw at beginning, I’m not suggesting this is what you have. I suspect my dad and sister had a problem with gluten. Have you not applied for pip which will help you with mobility scooters, lot’s of companies out there have you thought about a reconditioned one, hope this is helpful. Jeanette
Reply To: So sorry me again!!!!My last scooter I bought off ebay. Barely used it saved me around £1500. It works off road too as there are lots of places where I live that do not have any. Once you accept that you need one you can actually have a lot of fun with them. I know I have.
Interesting and sad at the same time about waking up with a headache, and difficulty in breathing at times. Has anyone ever tested your lung function, especially stood up and lying down. For me I have exactly those things, or should I say had. Some years ago they noticed that my right ling was not working when an xray showed it was in the same position as the previous one, and I mean exactly the same position. My own lung function testing at home revealed that my youngest daughter, who was six at the time, had better lung function as I did. It got worse and I eventually discovered that my intercostals had failed. Now I am on BIPAP and my headaches have gone, I have more energy and I sleep like a log. The moral of the story is of course pay close attention to your body and what it is doing, and never take ho humming for a final answer. Better to say I dont know and send you to someone who does know.Mike
So many love songs, so little love.
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