I have had extensive blood work done, had MRIs and ECGs. The only thing apparently showing up is low vitamin D levels.
My symptoms are loss of muscle and weakness in my quadriceps , hips, neck and joints of arms. I will be seeing a specialist soon but sometimes these communities have more knowledge than doctors. Which condition do you think I have. The muscle loss is particularly bad in quadriceps - have to sit down quite soon after standing and my neck is getting thinner and thinner despite me trying to do exercises to keep the muscle I have.
Any thoughts would be welcomed.
Cheers
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Frost111
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Hi, the 3 main types are inclusion body myositis (no current treatment but some clinical trials in progress) then polymyositis (often treated with immunosuppressants and steroids) and dermatomyositis (also treated by immunosuppressants and steroids). Each of these causes muscle wasting and weakness in the areas you mention.I have the first type. It took several years to get a diagnosis, when I first tried to get the medical profession involved I was repeatedly told I was just over anxious because I had had a few falls. Then after MRI scans, muscle biopsies and electromyography it was decided I had inclusion body myositis. It may take some weeks/months before you get a confirmed diagnosis. Try gentle exercises to keep whatever muscle tone you still have but sometimes too much exercise can cause further muscle damage. I bought a little pedalling machine so I can sit back and pedal to try and keep quadriceps going plus light dumbells for arms/shoulder.
Courtesy of the NHS since being diagnosed I have seen a specialist once in just under 4 years, all other consultations are telephone calls.
There are clearly other conditions that can cause muscle wasting - most of them linked to auto immune disease. The only accurate way to get a diagnosis is to wait for the Neurologist to process all the examination and test results. Don't give up.
I do not know of any medication that would help if it has not already been prescribed.
Take great care using stairs/steps - falls and stumbles can occur easily.
Hope the drs clarify things/treat you as soon as they can.
Thanks for your reply. I suppose the only positive is this is slow acting. I've had this since around 2019 and can still do everything. One frustrating thing is a top neuromuscular specialist in London dismissed my concerns - doctors in the UK seem not to care until you are at the stage where you can't walk. They seem oddly oblivious to clear muscle wastage despite all the letters after their name.
Hi, it's a shame you seem to be having problems getting a clear diagnosis, I know what that feels like. Don't give up - ask for the MRI scans on quads, arms, back and neck. Ask for biopsies and electromyography. I didn't because I didn't know the process and had to wait till the NHS got around to it. It's accurate to say some are slow progressive diseases but you need to know what disease you have.I stopped taking statins just because there were reports of them being linked to muscle wasting - my drs have never tried to put me back on them since the diagnosis and yet my cholesterol levels have not gone up very much. Maybe they weren't very effective anyway!
Hi, IBM is one of the diseases that does not respond to any medication according to my doctor's. Believe me I have asked them to try the immunosuppressants/steroids/immunoglobulin hoping it may help. I'm always told it won't help and could cause more muscle problems.There are some clinical trials ongoing but nothing has been found to help yet. Fingers crossed though.
It seems that those of with IBM are on the slow road to nowhere unless a treatment can be found.
I wish you well and hope your diagnosis has a more positive outcome.
Hi Frost111, Reading your post I can relate to the muscle weakness & fatigue. Doing the simplest of tasks leaved your body so drained and weak. I was diagnosed with Dermatomyositis around 7 years and 11 months ago. My condition is very active and muscle strength is poor. I do hope you get the right diagnosis for your condition. My condition was diagnosed by biopsies and blood tests. Good Luck in finding a good Doctor that can help you through this. Keep us updated.
Hi Frost111, I was diagnosed with IBM 3 years ago. My consultant is brilliant, when I was referred to him via my GP he started the investigation treatments straight away.
Not only am I suffering muscle loss and great fatigue my legs give way from time to time. Hence having to use crutches at home and wheelchair when out.
I think it is important for you to try and get the correct medical tests, help and good people around you.
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Hi, new here, and would like some help if you could please? :)
DM and pain
I have just been diagnosed with Myositis, but not had a muscle biopsy to confirm the type. How long did it take you to get a muscle biopsy?
Recently diagnosed with dermatomyositis 
