April 1, 2023 at 1:56 pm #202823Message Boards
I can’t seem to get my head round using these msg boards.
Am I right in thinking there isn’t much posted, as most of the posts are dated from years ago.
I have Limb Girdle 2L and would like to communicate with others that have 2L.
I did post a ‘Hello’ a couple of years ago.
Thanks .April 2, 2023 at 12:15 pm #202824Reply To: Message Boards
The Forum is not well used at the moment for reasons that are unknown to me. Please do keep trying , the more that do the more chance you have of contacting someone.
So many love songs, so little love.April 8, 2023 at 12:24 pm #202833Reply To: Message Boards
Indeed it is Ranald, but I have no way of knowing as to how to make it any different.Suggestions are always welcome.
So many love songs, so little love.April 10, 2023 at 12:10 pm #202836Reply To: Message Boards
Hi all,i haven’t been on here for a while i don’t have limb girdle but the md is affecting my hip flexors and proximal leg muscles, i now walk like I’m drunk also get hip pain and knee pain now have to use a stick don’t like this one bit any info from anyone else and how you deal with this. Just one over thing we all see charity ads for cancers the blind heart foundation and many others but i haven’t seen any for the md community especially for children with this condition.what does everyone else think best wishes all .Crazy catParticipantPosts: 0Joined: 27/01/2019April 10, 2023 at 6:58 pm #202837Reply To: Message Boards
Hi CC, sorry to hear about your pain. I no longer care about what I look like and in fact am now using a “ByAcre Overland” rollator. I find that greatly improves my walking confidence.
The pain clinic consultant has told me to come off my meds altogether! I am to get out and join clubs as that will help reduce pain! Apparently, being isolated makes pain worse. All right for him to make this pronouncement, it’s not him living with chronic pain! All I want is to try Tramadol or something, not do without even my Gabapentin.
I remember in 2010 at the Scottish MD conference, Apparently that year, the public donated twice as much to donkey sanctuaries as to MD Campaign. I think that tells it’s own story quite frankly.ranaldParticipantPosts: 747Joined: 05/09/2010April 11, 2023 at 1:09 pm #202839Reply To: Message Boards
So much has been going on here . Least of all are the comments on the forum. I have started a separate column for the thoughts on that. I might get sacked but it is time something changed. I am having to retype this answer as my previous one was deleted .
Cat I have also been suing sticks to get about mostly. I also use wheels when I am out. The sticks I use are Ski poles or similar. They give me better upper body support and allow what little is left of my lung function a little more support. They are less likely to appear to identify me as someone who cannot walk, although that was never a reason for me. However, I had them kicked from underneath me three times whilst in an ASDA store yesterday. The loops at teh end also mean I do not have to keep a grip on the poles all the time as the pressure is through my hands and it is mostly a downward pressure. Easy to use and has lots of other uses too like retrieving things I have dropped. Do try them if you can.
Ranald. Get a second opinion! I can verify that the suggestion you have been given does not work. I sed to be a qualified drone pilot. Walking to collect the aircraft, albeit not far, did not help even though I did it many time a week. Now I cannot do it at all. I have seven children and nine grand children, so you can imaging my house is like a railway station, and they need a lot on exercise to keep them sorted. that doesn’t work either. So no, going to a club will not get rid of your pain. Chronic pain, in my humble opinion will not go if you try and keep your mind off it. By its very definition it is chronic, i.e. long lasting. Sadly you will discover that most medics, most people, have not got a clue about MD. One of the reporters on BBC has it, but it is never mentioned on this “public service” broadcaster. I can also empathise when one Christmas my Tramadol was discontinued as I “no longer needed it”, and I had to go cold turkey as a consequence. Tis is truly where MDUK should be educating, but regretfully it is not happening. I do believe that there are more folk with MD than injured donkeys in this country. My pain consultant has been amazing, willing to try anything for me, and for now my MD pain is under control. Other oain is no. You are entitled to a second opinion go get one. Tramadol is not a lot to ask and indeed less f a problem than Methdone which is given without question. When i was working I always listened to patients. They know their body better than I. You know your body, go find someone who will work together with you.
So many love songs, so little love.April 12, 2023 at 12:59 am #202844Reply To: Message Boards
Hi Mike i actually already use walking poles as I’m tall i find walking sticks too low and make me stoop my hand sore also because they don’t have that look.the way i look because of the md i have makes me look older.i do find that I’m more stressed by this though i don’t convey this to my medical professionals, and yes you definitely know you’re own body when the ot,s and physiotherapists tell you that it’s the right height for you and it’s not and give you exercises that do nothing and cause more pain,last year i did an art class one day a week for a few weeks which was painful and it wiped me out so it definitely didnt take my mind off my pain. Just a last thought the muscular dystrophy community needs more attention out there ours is one of those that is over lookedCrazy catParticipantPosts: 0Joined: 27/01/2019April 12, 2023 at 12:28 pm #202845Reply To: Message Boards
Cat your last comment says it all, and that is why hte folk who are supposed to help us have no clue about what is going on. The only place I have found sensible help and understanding is the Neuromuscular Centre in Winsford. My second home almost, and one that has keep me mobile much longer and reduced my pain.
So many love songs, so little love.April 12, 2023 at 12:43 pm #202846Reply To: Message Boards
Me too Mike, I’ve been going there for over a year, it’s just a pity it isn’t near enough for me to get there. I’m there again in April. I’ve just done the NMC connect zoom physio session this morning. It truly is a great place.April 13, 2023 at 8:36 am #202854Reply To: Message Boards
Hello! I have 2L also. It would be good to hear your story
My story is a bit of a long one to be honest,better get yourself a brew & a sit down.
I started feeling exhausted age 36 when I worked part time & had 2 young children.
I was referred to my local rheumatologist who then referred me to Manchester. I had all the usual tests EMG, MRI, CK & muscle biopsies. After about 18 months it was decided that I had an inflammatory autoimmune disease called Polymyositis. Fast forward 20 years With no improvement despite being on steroids & a cocktail of toxic immune suppressants.
I asked for a second opinion. My new rheumatologist wasn’t convinced at all that I had Polymyositis so he ordered all the tests again including my 4th muscle biopsy. The same results – nothing untoward with the biopsy, abnormal EMG & the usual raised CK . He put me forward for the 100,000 genome project so I had my blood test for that & was told the results could take up to 2 years and to be prepared that I may not get a diagnosis from that either. It was about 2 years later that I got called in to Salford Royal hospital during the Lockdown by my new neurologist, he said they had a result & he wanted to see me face to face to tell me the news. I was told they had found that my genetic test had discovered that I had Limb Girdle Muscular Dystrophy type 2L. They said I had inherited a gene from both my mother & father & also there was something novel about my particular fault that hadn’t been documented ever before. I have deletion in exons 13-22, they said the faulty gene is responsible for muscle growth & repair. I wasn’t too alarmed at first because I thought oh well I’ve been living with this all my life & i’m not too bad.
That was 3 years ago I’m now 58 & have noticed that I’ve been steadily declining in strength and stamina & I have a lot of hip & lower back ache. Being referred to Winsford was the best outcome because my local physios just don’t really know what to do for the best. I’m struggling a bit mentally & worried for my future then I have to pinch myself and remember that there are people much worse off than me. I was told Limb girdle is harder to detect because progression is slow & it can mimic other conditions. This has been the case with me. At least I know what I’m dealing with now and don’t need to be on any of those awful medications.
Are you asleep yet ?April 13, 2023 at 3:02 pm #202855Reply To: Message Boards
Thank you BeadyBird that was very nteresting.
So many love songs, so little love.April 13, 2023 at 7:40 pm #202861Reply To: Message Boards
Oh no absolutely not! I like hearing everyone’s stories! Your experience of diagnosis is quite unreal and can’t believe it took so long! Did you have raised cks and abnormal emg when you first got tested for things? I’m so sorry it took so long for a diagnosis! I was first sent to a rheumatologist also and they diagnosed me with some sort of arthritis and put me on some tablets which I took for about a week Anyway a follow up following year saw a different one who didn’t agree it was that and sent me to a neuro and she took one look at my calves and cks so just did the gene test and about 4 months later got the letter saying it was lgmd. I think I got quite lucky with diagnosis! How is your pain? Has it got worse over the years? I think that’s the one thing I’m worried about in the coming years because I really struggle a bit just now with that and frustrates me so much. I can’t sit still though so don’t really help myself much! It’s easy to say there are people worse off than you which there probably are however it’s your body and your life and you don’t get to buy a new one! Just think the amount of people who moan about having a cold which clears up and goes away in a few days. We have a chronic issue that doesn’t clear up in a few days. I probably guarantee you have more mental strength than you think. It is tough though I agree with you.April 13, 2023 at 7:50 pm #202863Reply To: Message Boards
Oh no absolutely not! I like hearing everyone’s stories! Your experience of diagnosis is quite unreal and can’t believe it took so long! Did you have raised cks and abnormal emg when you first got tested for things? I’m so sorry it took so long for a diagnosis! I was first sent to a rheumatologist also and they diagnosed me with some sort of arthritis and put me on some tablets which I took for about a week Anyway a follow up following year saw a different one who didn’t agree it was that and sent me to a neuro and she took one look at my calves and cks so just did the gene test and about 4 months later got the letter saying it was lgmd. I think I got quite lucky with diagnosis! How is your pain? Has it got worse over the years? I think that’s the one thing I’m worried about in the coming years because I really struggle a bit just now with that and frustrates me so much. I can’t sit still though so don’t really help myself much! It’s easy to say there are people worse off than you which there probably are however it’s your body and your life and you don’t get to buy a new one! Just think the amount of people who moan about having a cold which clears up and goes away in a few days. We have a chronic issue that doesn’t clear up in a few days. I probably guarantee you have more mental strength than you think. It is tough though I agree with you.
Yes I did have abnormal EMG & my CK was raised , I had it checked every month for 20 years because of being on the immune suppressants. It ranges between 1000-3000 but my average is usually about 1000. My pain is not good now, I used to be a lot better if I’d done a lot & I rested I would recover quick but not anymore. If I overdo it now it can take a week to get rid of the aches & pains .
Very true about people moaning about the odd cold, we have to live every day like this.
How old are you if you don’t mind me asking and when did you get your diagnosis & which part of the country are you in ?
H 😊April 13, 2023 at 8:13 pm #202864Reply To: Message Boards
Well I just turned 39 today! I was diagnosed when I was 34 I think. The only issues I had in my late 20s was painful shoulders and muscle spasms. I honestly didn’t think there was anything wrong when I was diagnosed. I used to do lots of heavy lifting and was normal to get very sore after! It’s only been the last year or two that I have noticed a change in my ability to keep going. Terrible fatigue and muscle pain mostly in my lower legs. I walk a lot slower now too. I can still walk 18 holes of golf but it’s not so fun after it for a couple days. The painful spasms are better but I think that’s because I do less than I used to. The muscle twitching drives me bananas though! Do you get them? My cks were also around the 3000 and now average 1000. Why do they get lower then do you know? I’m in central Scotland. Where abouts are you?
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