April 25, 2021 at 9:40 am #194247Nerve Conduction Test
So, I underwent nerve conduction tests and the person who did the test told me two things. Firstly, that I have diabetic neuropathy in my legs. This didn’t surprise me as I have had Type 1 diabetes for 35 years. Secondly, that I have some kind of “muscle disease”.
When I went back to discuss the results with the hospital, the person who had arranged the tests said that he would refer me to a neurologist to investigate if I have myopathy and he also referred me to see if I have compartment syndrome. My query is whether the results of the nerve conduction test (plus an MRI) are open to such wide interpretation? For the time being they seem to have ruled out compartment syndrome as my pain comes on when walking, not through strenuous exercise. However, I have very limited mobility in my ankles, so walking actually IS strenous for me as every step is like taking a lunge.
I have been told this week that I am not due to be seen until September for the genetic blood test to check for MD. So, I’m kinda grasping at straws and hoping that what is wrong might be something other than muscle disease.DitaParticipantPosts: 0Joined: 20/03/2021May 2, 2021 at 9:34 pm #194383Reply To: Nerve Conduction Test
MRI will show muscle fiber damage which will be white on a MRI, why was a NCT requested as what lead to the request? I take it you already had a ck blood test?
I take it you had NCV and a EMG test at same time as NCV is just testing the nerves which in most MD types are normal where as EMG tests the muscle response and shows MD type signal responses.
If you want faster response look up your local private spire/bupa health care and pay to see a neurologist there with in a week or so, will cost around £200 to £300 for the appointment and will almost 99% be same neurologist you will be waiting to see in September………JoeParticipantPosts: 0Joined: 01/01/2020May 3, 2021 at 12:22 pm #194388Reply To: Nerve Conduction Test
Hi Joe, thank you for your post.
Yes, I should have said that I had NCV and EMG done at the same time. I’m not sure which result gave the indication that it is a muscle disease, I’m guessing it was the EMG.
I haven’t had the CK blood test yet. I was originally going to be having a muscle biopsy and the CK blood test at the same time. However, that has been put on hold now so that I can have the genetic testing.
What lead to the testing is that I have suffered pain in my calf muscles when walking since the age of 15, I am now 45. Over the last year it has become much worse and I am now unable to walk for more than a couple of minutes without limping and being in substantial pain. After a short rest the pain kinda releases.
There’s no MD in my family and I can’t help feeling the specialists are barking up the wrong tree. Thankfully my appointment has been brought forward to July now and the hospital will contact me if there’s a cancellation in the meantime. I guess it’s just a waiting game for now.DitaParticipantPosts: 0Joined: 20/03/2021May 3, 2021 at 1:42 pm #194390Reply To: Nerve Conduction Test
It’s good they brought it forward,
MD diagnoses is very much collecting all different results from various tests, a muscle biopsy result is only as good as the person interpretating it. The gold standard is a DNA test which backs up the interpretation of the biopsy, I would say a diagnosis from biopsy alone is a partial diagnosis so DNA test afterwards is required.
If I was you I would call your GP tomorrow and book a routine blood test for the following which are done at practices with results in 48 hours
CK blood test to look for muscle damage
Liver function test, MD leads to high liver function results
These test number results especially the ck one help guide towards what problems.
Don’t be ashamed to be pushy at your practice as most GPs have never seen a MD patient and know very little about it.
Good luckJoeParticipantPosts: 0Joined: 01/01/2020
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