Just curious, as I’m so worn out from doing the most little tasks.
I’ve had an EMG, mri Of legs and lung function! All reported back as normal .
I feel like what ever this is, fluctuates. On a good day I feel good, but on a bad day I struggle with stairs, keeping my head up, bladder control and swallowing!!!
Are the tests I’ve had done correct for diagnosis? I have a post pm100 antibody! I would appreciate your feedback, thank you x
It is still early days for me but initial blood tests show 'marked positivity to anti jo' and 'fluctuating positivity to anti smooth muscle antibodies' (whatever that means) . They questioned me about any muscular problems and I've had none though I did have a spell of extreme tiredness months back. Plus problems with bladder control! But now it's just tingling and numbness lower legs and feet and I'll be asking whether that is a symptom at the next appointment. However so far I've just seen the respiratory specialists as so far the main issue is lung disease. Got an upcoming dermatology appointment and still waiting to see the rheumatology lot! Ps I've seen comments about people having muscle biopsies?
My bladder control goes completely out of the window when I’m not feeling well. It’s like I can’t feel any muscles and then it returns once my other symptoms subside. I’ve mentioned this to many doctors, but now I fear it will be ignored as these tests have come back fine.
When I’m not well my legs are like dead weights and I just can’t walk for long. I just feel that maybe if this is a fluctuating disease, would these tests I’ve had done only show problems during a flare up! X
The 'fluctuating positivity' mentioned in my notes seems to indicate that blood tests can vary - I'll ask about this at my next appointment on Monday. Re the bladder control, I honestly had no idea this could be a feature of the condition till I read some forum comments! In fact I didn't even think to mention it to doctors.
Are you seeing a Mysiotis specialist?
My bladder issue is taking over my life, but no one seems interested. I’m 38 years old, so it’s a lot to handle. Thank you for taking the time to reply. I feel like I’m a ticking time bomb trying to find out exactly what is wrong x
Well I only got diagnosed by chance! I got a bug in November and when I had some continuing symptoms the GP ordered a chest x ray and an ultrasound which revealed the double whammy of a large gallstone and inflamed gallbladder plus lung fibrosis. Then I got sicker and before I could have the recommended ct scan for the lung issue I ended up in hospital as they thought the gallbladder might be infected. But I was kept in on account of poor breathing and ended up having the CT scan anyway plus all sorts of blood tests. As I understand it, they couldn't do certain blood tests 'in house' and it was one of those that had to be sent away that picked up the Myositis. But before that I had had all sorts of issues which I now know to be connected but which were barely acknowledged by the GP practice. It's tough at your age to be having bladder issues. Hopefully someone will be along soon who knows more than me about tests.
My nearest Myositis specialist is a good way away. It's bad enough going to the 'local' hospital which is over 80 miles round trip. All these appointments are costing me a fortune as I don't qualify for patient transport at the mo. Anyway I thought I would get the initial referral consultations/tests out of the way then talk to the doctors and my GP about the best way forwards.
I had a biopsy and they said I had polymyositos and lt could b cured wih steroids but they made l worse now I know I have IBM And have to rely on my daughter and carers anyone out there with this rare condition
There are quite a few of us our here with IBM. I was diagnosed in 2008. Unfortunately, there are no treatments for us. I find exercise helps strengthen the muscles I have left and has kept me moving. I also use creatine after exercise though my doctor tells me to take it every day. I use a cane for short distances and a rollator for longer distances. IBM affects us all differently. I keep hoping for a treatment.
What were your early symptoms of IBM?? X
Couldn't get out of a bathtub, weakness in neck were the first indications. Stairs became a problem, also getting off toilets. Soreness in one knee preceded walking difficulties. I now have two stairlifts. I have removed bathtub and put in a walk-in shower. Toilet has been raised with an toilelevator and higher toilet. Have had my throat dilated three times. I get very tired trying to walk.
Oh I am so sorry it progressed this way for you 🙁. My swallowing is a major concern, it’s the one thing I want help with to try and fix, but if these scans I’ve just has all come back normal then I guess they will just think I’m ok x
I get it. But, you know you are not OK. My family doctor told me to step up exercising when I complained my legs were weak. Finally, she sent me for further testing and I got a diagnosis. But you are so young, this stumps me. Something is not right.
Hi Lisalou, I have DM with priximal myopathy, ILD and Dysphagia diagnosed in March 2017. I had a muscle biopsy which confirmed myositis. You need a rheumatologist who has had experience of myositis - thats who diagnosed me within 10 minutes having been seen by various other consultants for months who did not know what was wrong. Best of luck. Carole.
When I’m not feeling well, I get burning skin rashes. My legs become really heavy and I get pains in my calves. I also can’t keep my arms up. Swallowing is also a problem. I’ve had an mri on legs and that’s come back normal, but I’m still left thinking what on Earth is causing all this then??? I can manage to walk maximum 20 minutes then I become exhausted, this surely isn’t normal x
It's very frustrating having so many challenging symptoms without a diagnosis. Unfortunately these rare conditions arent recognised by most consultants because they havent had any experience of them. A muscle biopsy could help if you can get one. Dont give up - many of us have gone through your situation but got a diagnosis eventually. Good luck.
I share your frustration Lisalou. Though I actually have a diagnosis, so far all I have seen is a respiratory consultant though the GP has supposedly referred me to rheumatology. I go with a list of questions - one of them last time was about bladder control. He just looked blank - as he does when I ask anything outside his respiratory remit. Plus he is 'old school' and doesn't really want to discuss things like treatment options with his patients! After 5 minutes of his time he is trying to usher you out the door with a 'See you in 4-6 weeks'.
I'm not half as unwell as many on here but yesterday a whole morning was taken up with a long hospital trip for a 15 minute lung function test. Someone took me but even then I spent most of the rest of the day on the couch as I was so exhausted by it all. Meanwhile I have some 90 year old neighbours who have lost their care package and people are trying to organise a rota of volunteers (including me) to help out. It's a dilemma as I'm unsure how much time I can commit but I don't want to come across as uncaring!
The latest in my daunting quest for relief is being told by rheumatologist mri of legs were fine and dermatologist said I have tendinitis and fluid in my legs. 🤷♀️
My legs are terribly weak and painful at times. I don’t even do exercise so how on Earth do I have tendinitis?
It’s all abit strange to me.
I get exhausted so quickly. You must remember your own limits and your own health concerns before thinking about helping others. If you’d like me that doesn’t come easy looking after yourself, but it’s important to not exhaust yourself
X
Hi Lisa
All I can say is keep plugging away at the healthcare system. Looking back, I can see now that most of the symptoms I experienced over the past 12 months were symptoms of this condition. But because it is rare and because so many symptoms can be symptoms of other conditions, doctors often don't see the big picture. Either that or they think you must be some sort of hypochondriac....
Re blood tests, the cosultant told me that one blood test had shown positive for a particular antibody but another test was negative! So I think it is important not to rely on just one test. All the best.
Thank you. I have a positive blood tests, but all the other tests done doesn’t confirm it. I feel like it’s a case of just getting to the point you can’t move that it maybe considered a firm diagnosis 😏 who knows hey. X
Hi Lisalou, I know this is an old post but wondered how you are and if you ever got a firm diagnosis?
Hi Lisalou, this is the first time I’ve seen your post and I’m wondering how you’re getting on?
Many of your concerns sound familiar and I also experienced an equally frustrating journey to diagnosis.
IBM people, please post
Hello to every sufferer fighting his/her way back to a kind of normality
