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LGMD 2B Experiences?
Hi All,
I have just had the results back from my muscle biopsy, with a confirmed diagnosis of Limb Girdle Muscular Dystrophy type 2B.
I am 23, went to the doctors with a slight limp and muscle atrophy. I have noticed more recently that stairs are difficult, particularly with no handrails.
Just wondered if there were any other users who have this sub, and what your experiences are, timescales I can expect, and things I should look out for. The thought of losing the ability to walk scares me, particularly with wanting a family and not being fully able to do thing things ‘normal’ parents can.
Regards
Jon.
Reply To: LGMD 2B Experiences?Hi Jon and welcome to the forum
I dont have your form . I have Sepn1 Rigid Spine. But I have went thru what you are facing. Its very difficult to put a time scale on changes or deterioration. even if you had a sibling of a similar age with your form of MD you wouldn’t necessarily track at the same rate or share all the same issues and characteristic.
The stairs issue was always an issue with me from an early age. I leg dragged up doing up stairs.
Think in a general sense the best advice I can give is try and keep your routine in what activity you do. Think about getting the Flu jag in winter as a preventive measure as in lots of the MDs deterioration comes after a period of ill health, injury and forced bed rest.
Swimming is a good exercise as the water takes your body weight and limits strain.
Some Facebook groups
https://www.facebook.com/groups/mdctrailblazers/https://www.facebook.com/groups/livingwithmd/
https://www.facebook.com/search/top/?q=limb%20girdle%20muscular%20dystrophy
Reply To: LGMD 2B Experiences?Hello and welcoem to the forum Jon. My condition is different to yours so i cannot advise you about the prognosis except to suppor the advice that Catatude has given which is essentially everyone is differnt. May I also amplify that theme a ittle too. you talk about wanting a family and being a ‘nromal’ parent. You are a normal parent and you will have the same trials and tribulations as anyone else, you are just different. Having MD does not make you a lesser parent in any way, you may well find it will spur you on to do greater things as a parent.
So please tkae each step as it comes, and make adaptions along the way as everyone who is a parent does anyway. You can always get he handrails put in if you need them , and lots of other aids that will help you, and there is lots of help out there especially if you make use of this forum.Mike
So many love songs, so little love.
Reply To: LGMD 2B Experiences?Thanks for getting back to me.
It’s such a difficult time, as I’m sure everyone else here has found out. As much as I know I should be thinking about the things I can and will still be able to do, I can’t help but think about the things I will not be able to do. I don’t feel like I will ever think differently to that, but suppose I don’t know until I get there.
I must say I’m quite shocked by the lack of emotional support by the NHS for people who have been diagnosed. I don’t know if its the same for everyone, and I’m fortunate in the fact that my form is not life limiting, but obviously is still a lot to take in.
I know there are people out there who are available such as people at charities like this one. I’m also sure that if you went to your GP afterwards that they would provide you with counselling if you needed it. Just having a bit of a rant really, not even that I feel like I need any counselling
Reply To: LGMD 2B Experiences?You are not on your own in thinking that emotional support within the NHS could be improved.
I remember speaking to a consultant about this issue and he said he and his team are continually battling for resources to fund that ever so needed aspect of care and support.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Reply To: LGMD 2B Experiences?Hi Jon
Welcome. I have LGMD2L and reading about the types that are similar it appears 2B, 2L and Myoshi Myopathy are similar in their symptoms and effects, but it’s also important to remember MD affects everyone differently. My symptoms began when I was 36, I’m now 53 and yes I’m weaker but I can still get about with a cane. Like you, stairs without handlebars are difficult and in people’s houses I raise eyebrows by crawling upstairs on all fours
Well – it works for me! Perhaps add the info you have with info from your consultant for a rough prognosis? I’m sure a qualified person will ease your worries. I certainly wouldn’t let my illness affect my desire for a family. And Jon mate, you’ll still be normal even with this I know it’s scary but you’re not alone.
Some info here if you haven’t already seen it
http://oldsite.musculardystrophyuk.org/wp-content/uploads/2015/02/LGMD2B.pdf
Reply To: LGMD 2B Experiences?Hi Weeble,
Good to hear from you. Thanks for the link, it is something that I have looked at already. I feel quite conflicted at the moment, though, everywhere that I read it says that most are able to remain ambulant, and that progression is slow, but from the rate which I feel it is deteriorating at the moment, I feel like I won’t be able to climb a set of stairs at the age of 30. I think there’s a certain difficulty in the uncertainty of the disorder.
Admittedly, I need to do more myself, and get myself out of a state of self-pity, deal with it, and do some exercise and physio to help me remain as independent as possible. I’m sort of presuming after getting used to the fact that this is something that isn’t going to change that I will kick on and battle it as much as possible. (first physio session with NHS is on 2nd March)
Today I have noticed that my arms and legs feel achy and fatigued, sort of like I did a big gym session yesterday (I actually sat at a desk all day), are these symptoms you have noticed with your type also? presuming they come and go if so.
Thanks Mike and Sar78 also for your inputs
Jon.Reply To: LGMD 2B Experiences?Achy legs/arms can be worse with dehydration.
When at work I have the ‘half hour’ rule. I make sure to change position and move wiggle arms legs, fingers and toes as well as working neck. It is easy to look into one position.
there is a level of uncertainty. My best advise is dont dwell on what might happen and when. look after yourself as much as possible and go out and live. It might be the case stairs get hard by 30 but you also could be hobbling up them at 80.
Reply To: LGMD 2B Experiences?Today I have noticed that my arms and legs feel achy and fatigued, sort of like I did a big gym session yesterday (I actually sat at a desk all day), are these symptoms you have noticed with your type also? presuming they come and go if so.
Yeah this happens to me if I sit still too long, I seize up after a long time and it’s actually harder to get up without what I call ‘cramp’ which I also get in my hands and lower arms and shoulders. The gym explanation is really good, it’s exactly how I explained it, and yes it comes and goes depending on my level of what’s expected of me, my dehydration, and how well I’ve eaten. When I used to drink alcohol the next day I was especially exhausted probably due to as cat says to dehydration. It was mad just how much alcohol affected my muscle strength. I couldn’t do a desk job now ‘cos holding my arms out above a keyboard hovering would be too painful after all but a few minutes. You have every right to be a bit depressed, upset, and a bit angry at what’s happening to you cos it’s scary and unknown but as cat says, don’t dwell on the negative if possible ( I know it’s hard early doors) and keep mobile. You’re not alone and make sure you ask your consultant/employer/ etc for any support you need. When my symptoms first appeared I was especially tired due to the massive spike in my CK levels but over time I adjusted to what was happening to me and so did my body. Good luck and take care and keep asking
Reply To: LGMD 2B Experiences?Does a raised CK level cause tiredness, I can’t remember the figure, but I know I certainly have hyper-CK-emia, at around 50x the normal level. What doesn’t help is that I am also deficient in B12, which makes you feel tired, so as soon as I’m not engaged in something, or doing something monotonous (like work), I feel like I could fall asleep at any time. Although, I try not to read into things too much, or I feel like I’ll blame everything on my conditions.
I’m pretty good with drinks normally but will keep it in mind. I have also realised if I get up and walk for a bit, the aches go, and muscles feel less fatigued. I’ve realised quickly that every day seems different, emotionally and physically, and I quite literally need to take one step at a time.
Thanks to all who have come back to me, and I hope this post helps others out there feeling/experience the same thing. I’ll be sure to try and contribute as much as I can to the forums.
Reply To: LGMD 2B Experiences?I’m glad you feel able to share all this with us. By the sounds of it, you are aware and working things out as you go, adjusting at your own pace. The fact that you can write all this down is a good step towards dealing with it.
I think most of us become experts in ourselves! I have learnt how to read my body more as I have got older, can identify what works and what I shouldn’t do again.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Reply To: LGMD 2B Experiences?I was diagnosed with LGMD2b when I was 28 (I’m now 44) but I had symptoms for a year or so before. Progression has been slow and gradual. Although I now use a powered chair most of the time I can still weight bear and walk short distances.
In the last couple of years my arms have become weaker which is producing a new set of challenges! It can all feel very negative to begin with. It’s easy to focus on what you can’t do but once you flip it round you realise you can still achieve so much. There will always be some practical limitations but you can’t let fear hold you back.Have you had contact with the team at Newcastle? I have just finished a 3 year Clinical Outcome Study with them & they are very supportive and a wealth of knowledge. The Jain Foundation funded the study and can also help you with information.
Feel free to ask if you have any questions.
Reply To: LGMD 2B Experiences?Hi Jon,
I have an unspecified type of Limb Girdle MD, which I believe is a rare type. I’m still hoping for a precise diagnosis. I have probably had LGMD for about 16 years now. It is in the last 4-5 years that it has really impacted upon me. I started to use a stairlift about 4 yrs ago. I have a stairlift at home and at work. I have used a mobility scooter for about 4 years now. I have limited walking and only with two sticks. I have a hoist in my car for lifting the scooter in and out of the car. Sit to stand is a challenge and I do find that this gets to me. I can only manage a step of 50mm in height now and with a grab rail. I am just starting to find that it is getting harder to raise my arms as my shoulder girdle becomes weaker. I seem to have little core strength.
I remember the times when I could go in to London on the underground and wander around. I can’t do that now. It’s hard sometimes to think about how my life was before and even in the early years of having LGMD and then think about it’s impact now. So it’s best to live in the present and not think too much about the past or future.
The forum is a good way to be in contact with people who face similar challenges as I really don’t think that my able bodied friends have any idea. I hope you find the forum useful.
Shevvy
Reply To: LGMD 2B Experiences?Yes Jon at the beginning of my symptoms there were massive CK levels which fatigued me greatly BUT it subsided over the coming weeks and months to an acceptable level. I found I needed folic acid from blood tests so I just take a multivitamin now ‘in case’ but as I’ve said earlier a qualified consultant will be best to ask when you get the chance, I’d hate to give you any incorrect ideas on how it will affect you on a personal level.
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