I should also add that I was seen at genetics in Aberdeen on March the 15th. The consultant took a blood test for the dystrophin gene and is looking at types of muscular dystrophy and muscle myopathy. This blood test takes 3 months to come back.
So as you can imagine not knowing what is wrong with me is driving me crazy. And getting a diagnosis is crucial to getting help and support.
I've already got some AIDS from the OT's
I'd really appreciate if anyone could reply because I'm driving myself crazy.
I feel my symptoms fit more with ms than MD or muscle myopathyZ
The consultant at genetics has talked about me seeing a neurologist once the results come back and possibly having a muscle biopsy. But that could be months and months away.
So I'll go to my GP armed with my list of symptoms and fingers crossed that pushes things along quicker.'
Hi Helen and welcome,
Unfortunately, there are a lot of medical conditions that have a lot of the same or similar symptoms associated with MS, but i'm actually stumped on how someone of your age and symptoms could end up seeing a geneticist before you've even seen a neurologist or had an MRI.....
For MS to be on your list of possible causes, you'd need to have some neurologically abnormal clinical signs that corroborate some of your symptoms being suggestive or consistent of a neurological condition like MS, MS suggestive-consistent brain and or spinal MRI's, and or any additional diagnostic evidence eg LP, VEP etc suggestive or consistent with MS.
With out any relevant testing, neurological conditions like MS wouldn't even get on your potential causes list, so if you haven't seen a neurologist yet i honestly think that should be your next step and whilst it's easier said than done, please try not to worry too much, it's quite possible that what's causing you all these issues will not end up being muscular dystrophy, muscle myopathy or MS, so please try to remain open minded until you have some of the diagnostic evidence that you need .
Hope that helps.........JJ
My GP has referred me to a neurologist today regarding MS. Which is great. The bad news is there's an 18 week waiting list.
The main reason muscular dystrophy and muscle myopathy is being looking into is because an enzyme the leaks out of wasting muscle into the blood has been higher than average in my body since October 2014. So there is definitely muscle wastage somewhere they just don't know where yet.
I do believe I have either of these 3. And even my GP is now leaning more towards MS. Although that doesn't ex plane the raised Ck levels (not the ck levels in the kidneys the ck levels which seep out of the muscle.
So it's a case of waiting now.
There's no doubt that I am very, very unwell and that it's bit fibromyalgia X