FINALLY SAW A NEUROLGIST 10.07.19

[LoolooLacey2]

Hi, I have not been on here for a long while as I was waiting for my Neurology appointment, have been waiting since August last year and finally saw a Consultant on 10th July at a OP Clinic in my home Town. It was a lady and she was so nice, very interested in my case because she already sees my son once a year who has many of the same symptoms as me. She was shocked at the severe muscle wasting from my calves down to my toes. She has ordered an MRI to check what is going on with my legs and also repeat EMGs and Nerve Conduction Tests. I have heard nothing so far about any of the tests, 2 months now, so hopefully it will be soon. It is so depressing always having to wait months or longer for things to happen. No further forward to a diagnosis as yet. One puzzling issue is neither my Myopathy Consultant nor the Neurologist took bloods, which is a bit odd is it not? If and when I see either of them again I will bring this up as it was mentioned in a letter to my GP last November - I have a copy of this letter. Nothing has changed for me, I had a good beginning of the year, but kinda had a rough couple of months with some odd symptoms, but hey ho still here, not giving up that is for sure. Once I get my tests I will come back on with an update. Take care all of you. X

[Amanita]

Good to hear from you again, LooLooLacey,

Great that you have actually seen a neurologist at last and that she is sympathetic and understanding.

I had to wait several months for my nerve conduction test. If a blood sample is taken some time for a genetic test, you might have to wait months for the result (7 months in my case - I think it is less for most, though - and even then, for a minority it may not produce an answer) .... The important and practical thing in the shorter term is to help deal with your symptoms - have you been referred, for example, to a physiotherapist ?

I used to be dismayed by the long waits for everything in the NHS, but think I have got used to it by now! I was referred for something completely different in April, and look forward to a preliminary appointment in October. I have absolutely no idea how many more months I shall have to wait for the actual procedure.

Glad to hear you aren't giving up - that's the spirit!

[LoolooLacey2 in reply to Amanita]

Thanks for your message. I think the reason they did not take blood is that my samples from back in 2001 have been sent away for DNA testing by the Human Genetics Doctor and he did says it may take at least 6 months or more. So it might be before Xmas as I saw him in Feb this year. He said that they store all samples and they never destroy them. I am like others on here used to waiting a long time for answers, so will just be patient for another while. Will keep you posted as things go along. I definitely don't give up. I will be back - ha ha! X

[beachwine]

Looloo, glad to hear something is going forward for you. Things do move slowly with CMT answers. Hang in there. Keep smiling. It makes people wonder what you have been up to!

[Enzowilldoit]

Hi looloolucy..as like the others, the tests take a long time. My dna test took 8 months for results because i do not have the typical CMT, but something more rare. Also the neurologist never took blood in all my appts. It sounds as though you at least have got some things going on, doctors listening and trying to follow through. But being patient is important. Also they told me, there is not much we can do for it except treat symptoms, no matter what we actually learn. This has all been over decades. I am now fulltime in wheelchair, feet..legs no work..hips bad..sigh. But we keep on keeping on! Count blessings. Like what if all i had tomorrow is what i thanked God for today?....😊👍💜

[chuckles333]

Hi I have a appointment on 5th December, reading some of your posts I have a greater understanding what to ask. Previous time I went for check up, not a lot was done, in just a chat, how are you etc? The first time 7/10 yrs ago tests were done. I'm looking forward to meet my neurologist who sees me. Will keep you all posted with outcome

[Amanita in reply to chuckles333]

Hi, Chuckles,

I have found from experience that it is very useful to prepare for a medical appointment by writing a list of your questions and concerns, and taking two copies of it along with you. You have one copy for yourself as a reminder so you don't find yourself leaving the consultation without having asked your most important question, and it gives the doctor/consultant an idea of what you want to know. It also shows him/her that you have put some thought into the matter and want to make the best use of their time.

All the best for 5th December. I hope you will find your appointment productive and helpful