November 10, 2020 at 5:34 pm #190750undiagnosed at 50.
Hello I am new and would like to know how people get diagnosed? I am older and have only started having problems in the last coup[le of years.
i have seen a neurologist and was sent to have nerve conduction test done but could not as was too painful like electric shocks.
i just wonder if anyone else is going through a similar thing?
also the font on here is small can anyone suggest how i change it?
thanks.November 11, 2020 at 12:55 pm #190774Reply To: undiagnosed at 50.
I was diagnosed at around 40, simply because my son was.. I did not notice any problems until some ten years later. You are clearly in the right care being on the list of a neurologist, as they would be clearly the most qualified to advise you on the causes of your problems. Diagnosis of anything within the body is, in our case at the very least, not a quick and easy process. Especially if you take into account the multiple variants of MD. Whilst it is disappointing for you that you cannot have nerve conduction studies, I am sure your consultant will be looking at other avenues to try. I would also urge you to try again to see if you can deal with the pain of the test as it could be most helpful for you.
One of the things I always valued was a patient coming in with a full history. That always meant a diagnosis could be made more accurately and quickly, at least for me. So I would urge you to note things down, keep a record. The consultant may not have the time to read it all, but you will, and means you will also have a better understanding of things going on inside your body. In turn you can relay that to the clinicians trying to help you.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015November 12, 2020 at 3:33 pm #190832Reply To: undiagnosed at 50.
HI and welcome to forum
The nerve conduction test is uncomfortable. Where they able to glean any results? The other ways to diagnose MD is a Blood test (prob done pre conduction reflex test)for CK levels and a biopsy. My first biopsy was a simple sample of muscle that resulted in 2 stitches and then years later a more comprehensive sample was taken to confirm my exact MD. This is a larger sample normally taken from inside of leg.
Not sure where out text size button has gone. I will investigate
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010November 13, 2020 at 10:12 am #190843Reply To: undiagnosed at 50.
thanks Cat appreciate your reply, people been very helpful on here.
i get trapped nerve in my leg often and wonder if thats a common problem?
as of tests i have only had normal blood test for other things because of ovarian problems.
i am hoping to hear back from the neurologist, but i think it will be a while, because of covid.
I think i should talk to my doctor again.
thanks.November 13, 2020 at 10:15 am #190845Reply To: undiagnosed at 50.
hello Cat i was unable to manage the nerve conduction test as i only had it done on my finger and was like electric shock. going through my arm. just couldnt go through with it.
thanks.November 13, 2020 at 10:37 am #190847Reply To: undiagnosed at 50.
Hello Mike, thank you for your reply, very kind, i do write things down and have a diary, i don’t have any M.D.
in the family, as i know of?
my mum had polio when she was young,
i have tried 2 different types of nerve conduction, but i found it very difficult even when i took diazpam.
I never new how many variants there were and how it can come on in later life.
this site has educated me, it was only because i saw a news programme it got me thinking.
I am also in the early stages of menopause, so it complicates things.
sometime you just want answers and its very difficult, because i havent worked in over a year and couldnt now possibly do the jobs i use to do as they were very physical.
its been really nice chatting.
thank you.November 14, 2020 at 10:36 am #190873Reply To: undiagnosed at 50.
Hi, im late onset (50) when I was getting tested my first alarm was raised ck level in my blood .
But then I did had nerve conduction which I agree was uncomfortable but painful on my legs, followed by muscle biopsy.
Can remember lots of scans aswell.
I have finally got my diagnosis.
Hope you manage to get answers
It’s a journey but keep asking lot’s of support around .
Take care 🙂 TracyTracyallcock7ParticipantPosts: 0Joined: 06/01/2020November 14, 2020 at 7:29 pm #190882Reply To: undiagnosed at 50.
Things must have moved on a bit in terms of the nerve conduction. Mine was done via thigh and upper arm. Am bit confused how doing on finger would show the nerve return signal they are looking for.
Hope they can work out another way to get result.
Trapped nerves, sciatic are common as is neuropathy in the extremities. Most commonly it comes from back and postures as the muscles and joints weaken. Orthotic insoles might help a bit ot some stretch from a physio
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010
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