EMG & NERVE CONDUCTION STUDIES

[LoolooLacey2]

Finally, after a year wait to see a Neurologist in July past (2019) I have been referred for EMGs and Nerve Conduction Studies as she noted severe muscle wasting from just below my calves on both legs. No muscle left round my ankles, very minimal left. So today I had the tests, plus some special ones apparently around my neck and shoulders. However, the Dr. could not find my muscles in the front of my foot at my ankle, she says they are so wasted they are virtually non-existent. All my bloods and muscle biopsies were sent away in February/March but no joy yet. I have had EMGs 4 times, once for carpal tunnel and twice before many years ago (26 to be exact) and all have been abnormal, but on those occasions nothing was done and no follow-up. First time having Nerve Conduction, she was very thorough. At least this time the Neurologist is interested in unusual and rare neurological conditions. They want me to have an MRI to see what the muscles and nerves are doing, will be a long wait as not urgent, only problem I have is I am claustrophic. However, GP is to give me Diazepam to try to relax me, hope it works as really do not want to waste an appointment. Will keep you posted on how things progress, looks like a long haul. This forum is so helpful and I appreciated all the comments I get from you all. Thank you all. XXX

[HorshamMalc]

That's great news Looloo, thanks for sharing! Your legs and feet sound very much like mine. I struggle to walk, due to severe foot drop, but I'm not too bad when I'm wearing my AFOs. I'm really intrigued by the MRI scan, that's going well beyond the normal diagnostic tests they do for CMT and hopefully may produce some very interesting and useful results. I've not had an MRI scan myself but, looking at videos, it seems like you can see out of both ends of the machine as it passes over you so fingers crossed for you that it isn't too scary! Very best wishes, I'm looking forward to your next update! Malc

[Amanita]

Hi, Looloo,

I'm so glad someone is really taking notice at last, and that you are actually being seen by a neurologist who is interested and prepared to make a thorough investigation. It is good that she also sees your son.

I do hope she will soon organise some practical help for you too (e.g. referring you to an orthotist and a physiotherapist). Sounds as though you need some, whatever the genetic results show eventually.

All the best - and do keep letting us know how you're getting on.

[handmaid]

I have an annual MRI for a left sided acoustic neuroma. The 1st MRI I panicked & left in tears. 2nd MRI booked I was advised to use an eye mask, I really don't know why it works but it does. Perhaps it's a case of what you can't see can't upset you. Hope this tip helps you all the best.

[LoolooLacey2 in reply to handmaid]

Thank you for that advice, I am terrified of the enclosed space, but I really must get this done if it is going to help find out what is going on and for other patients to. I am going to take Diazepam which seems to work so well for me and helps me relax, I have had it for dental treatment as I am phobic about the Dentists. I was thinking if I just shut my eyes and didn't look and had music on and Diazepam I might manage this test. Will keep you updated. Thanks. X

[beachwine]

LooLoo, you must have the patience of a saint! Before I waited a year for a test I would have found another doctor. I'm with you about being claustrophobic. Check with your doctor to find a MRI hospital/clinic that has an open MRI. My city is not that large & there are several places to get an open MRI. Good luck. My neurologist never suggested a MRI after getting positive genetic result. Let us know if it shows more. Pam

[PRseam]

If you have muscle wasting around the front of your ankles and have foot drop as a result you might benefit from ankle foot orthotics to help with walking

[oliverdeb]

Good luck. Don’t worry too much. CMT is CMT not much you can do about it But you must keep fit and do work outs. Worked for me %100