April 2, 2023 at 10:08 pm #202828Oh no…the arms
Have had weakening legs for years. Take migraine preventers that add to my fatigue, but also really struggling with physical exhaustion. Fall asleep so easily, walking is like being in thick mud…etc.
Now, my arms ache when I’m writing on the board (I’m a teacher), holding steering wheel when driving, clipping husbands hard with clippers etc. Have to let arms drop down.
Not enough is out there about lgmd2i.
My ejection fraction has been tested and is 55%. Neurologist said its borderline. But, according to NHS it is normal. I’ve asked for referral to cardiologist. They never seem to test my breathing.
I wish someone could just tell me what to expect next.PipsParticipantPosts: 0Joined: 04/03/2019April 3, 2023 at 1:37 pm #202829Reply To: Oh no…the arms
As there are si many different types of MD and also so many different ways it will affect us I would always say listen to your body. Which means, as has been said elsewhere in this forum your need to be persistent. Get on peoples cases, and above all do not rely on others to tell you what you may need. From what you are saying it seems that you do need a good review of many things. I have been through very similar things but I have found that getting experienced help from specialist physios can make a world of difference. Your breathing does need looking at. Do you have a pulse oximeter to test your blood oxygen levels? Well worth it for a few quid. A good set of bloods would help especially looking in the red blood cell areas. A talk with your local ventilation team will help if you are having trouble breathing. And as a vague possibility wondering if you may be diabetic but that may come out in the wash. I have always believed that although we have MD of whatever form we can always get something else which may be separate or as a sequelae of the MD. Always remember too that there is no such thing as “normal” with MD or anything else for that matter. Do please keep us updated, and see you GP as soon as you can.
So many love songs, so little love.April 3, 2023 at 7:31 pm #202830Reply To: Oh no…the arms
Hi Pip. My ejection fraction is 50% and was diagnosed with left ventricular systolic dysfunction. From what I understand you get preserved ejection fraction and reduced ejection fraction. I was sent for a cardiac mri which picked up the LVSD and not the echo (I think) I would maybe push to get a cardiac MRI done. I do have family history of 2 deaths in their 30s of heart disease on my dads side. Dads brother and dad. My dad has now had 3 heart anttacks. Also I had extremely high blood pressure when I was in my 20s which I don’t think has helped my heart! Weirdly though that’s when I was competing in sport at a professional level. Now I do a very minimal amount and my BP is fine! The pain and fatigue is very very tiresome that is for sure!! Trying to manage it physically and mentally is a life achievement in itself!April 8, 2023 at 12:26 pm #202834Reply To: Oh no…the arms
Courtesy of Mr Google
Ejection fraction (EF) is a measurement that your physician may use to gauge how healthy your heart is. Your ejection fraction is the amount of blood that your heart pumps each time it beats.
Ejection fraction is measured as a percentage of the total amount of blood in your heart that is pumped out with each heartbeat. A normal ejection fraction is 50 percent or higher. An ejection fraction below 40 percent means your heart isn’t pumping enough blood and may be failing.
So many love songs, so little love.April 12, 2023 at 8:55 pm #202851Reply To: Oh no…the arms
Sounds exactly right Mike! Apparently ejection fraction is not the only thing they use for weakened heart muscle. Last time I went for my scan the lady doing it said I just want to go get someone to look at this. She came had a look and I asked what the ejection fraction was and she said what do you know about ejection fraction? I said nothing really but I know it’s to do with how well the heart pumps. She said I can’t really tell right now until we do the measurements but I wouldn’t worry about the ejection fraction as I can make this any number anything due to certain things. Weird! So then I asked does it look ok and she said we can’t say anything until the measurements are done but they will be in touch. They haven’t been in touch so guessing all fine. I had a collapse just before Christmas and lost ability to speak for a few minutes with some shaking. Went to docs a couple days later as I still felt terrible and they put it down to a seizure and lost my drivers license for 6 months it’s just so frustrating not understanding how the body works!April 13, 2023 at 7:47 pm #202862Reply To: Oh no…the arms
Hi Mike. I am being well looked after by the gp I have another scan coming up soon and trying to sort out the blood pressure because annoyingly that has got too high again. And to top it off they have found some skin cancer so that needs cut out too. It’s been a rubbish few months!April 14, 2023 at 11:20 am #202868Reply To: Oh no…the arms
Hi all just like to say it’s nice to see that we’re posting on here again as I don’t do social media. Secondly does any of you have arthritis and diabetes as I feel there could be a link with our md conditions due to the muscle wasting interested to here your thoughts and experiencesApril 14, 2023 at 12:50 pm #202873Reply To: Oh no…the arms
Cat, I could not agree with you more. I am a type ?? diabetic. Since going on insulin last year after a serious DHA, I have had unremitting joint pain. Also I developed a viral based rash a couple of years ago. It comes and goes when it feels like it, in the process making me very weak and pushing blood sugars up to over 15. My doctor, who has just retired, has never seen one like it before.
Perhas it is time to have a new thread where we can explore this further as I have been doing some research myself, which has been very revealing.
So many love songs, so little love.April 14, 2023 at 1:13 pm #202874Reply To: Oh no…the arms
Maybe we need to share our md journey / history not to dismiss all the research that is done into md. But that is not as valuable as living with the condition and the other conditions that seems to go with it, yes we need a new page. Look forward to hearing from you allApril 14, 2023 at 8:41 pm #202876Reply To: Oh no…the arms
Mike tell me more about your rash. I developed one two years ago also. I am 90% sure it was a new allergic reaction to ibuprofen/naproxen. It’s a full body rash apart from my face chest and feet. Very itchy. They say it’s eczema but it doesn’t look like eczema to me. I had that as a child just in the creases of arms and knees. I went to a dermatologist a couple months ago and says it’s quite strange but says it is eczema. I would do anything for it to clear up! It does clear for a few days and comes back, it is so miserable! Is yours anything like that?April 15, 2023 at 12:25 pm #202877Reply To: Oh no…the arms
Mine is on my thighs, forearms and occasionally hands. Comes up in bubbles which do not contain fluid. They can be grouped together covering a wide area, or singly. I did have them on my face initially but they simply vanished leaving behind age spots over night. I sought specialist help and the answer was I have Scabies, despite me telling them I had treated myself with the relevant cream a number of times. Then it was shingles, but it dd not present the same way. My own research led me to believe Dematomyositis, but a single unrelated test by a very rude technician )who did not take into account my FHSD, said categorically it wasnt. For nowI will stick to my own diagnosis. It is very itchy, and I mean to the point of drawing blood when I scratch it, relieved only by Calamine cream. As usual, no one seems to care despite the fact that it affects my MD and my diabetes.
So many love songs, so little love.April 15, 2023 at 1:37 pm #202878Reply To: Oh no…the arms
Sounds very different to mine. My good friend was first diagnosed with dermatomyositis but after a bit more digging they found it was anti synthatase syndrome. She suffered with a rash pain and weakness and breathing difficulties when it flared up and high inflammation levels. I don’t know a huge amount about it other than the steroids work great for her. Maybe something to look into?April 15, 2023 at 6:32 pm #202879Reply To: Oh no…the arms
Hi,just a quick question regarding rashes do either of you have any other symptoms with the rash ei stomach trouble bruising bleeding gums and has anyone in your family had similar symptoms or been diagnosed with any food intolerance like gluten intolerance or lactose intolerant worth looking into I have gluten intolerance just a thought of course not suggesting anything but you can be tested for these but I would start keeping a food diaryApril 16, 2023 at 12:19 pm #202880Reply To: Oh no…the arms
No one in my biological family has anything like that, I certainly have none. Same with gluten intolerance. I have a history of a perforated bowel but that was several years ago.
So many love songs, so little love.April 27, 2023 at 8:21 pm #202903Reply To: Oh no…the arms
Hello. Sorry was away last week apologies for the late reply. My mums mum had celiac but never had a problem with skin issues. I do however completely agree with food being a major factor for inflammation of the skin and other diseases. I think mine was my body taking a sudden dislike to anti inflammatories, I’m hoping it clears up soon been nearly two years now I also think stress is a big factor. My legs have been covered in bruises all over from scratching. Talking of food and inflammation you should Google CD-TREAT diet. My company produces the food for this and it has been a very interesting process learning how food can be so beneficial or detrimental to our bodies
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