Thanks for advice. Can anyone who has CMT advise if the rate of progression?

Symptoms vary greatly within the same family. Nobody can predict how it will progress. And there are over 70 types of CMT and still counting. CMT1A is the most common. You should find out if CMT is indeed in the family.

Appreciate all your comments thanks. Won’t be able to see the Neurologist until late January. Will update then, in the meantime trying to not panic and get depressed. Would love to hear from anyone who is experiencing CMT symptoms and how they have managed.

Hi suzyt, It's a long time waiting to see the Neurologist until the end of January if you're really worried but try not to overthink it all and make yourself sick while you wait.

Peripheral Neuropathy Forum

You may want to use the search feature there as well.

Advanced Search Feature

A thought- I read that some medications for treating high blood pressure can be the cause of peripheral neuropathy. Has anyone had any experience on this?

Hi suzy,
Don't forget there's the Peripheral Neuropathy Forum . Just click on the underlined area and it will take you there. You might find more responses to specific questions like this one over there as more people with PN will be checking that forum rather than this New Member area.

There's also the sub-forum on PN PN Tips, Resources, Supplements & Other Treatments Sub-Forum

Search feature for all the forums is https://www.neurotalk.org/search.php
If you have a specific medication you're looking into, you could run that through the advanced option and click on the PN forum in the list of Options there. Need any help with any of that just post and someone will be sure to help.

btw, I'm sorry to read that your symptoms are still getting worse. I hope you get some answers when you do get in to see your Specialist. I developed neuropathy after taking 2 oral medications for melanoma treatment [called Targeted Therapy]. They were ceased after only about 10 days (7 to 10 days, forget exactly now) but anyway my neuropathy got really bad in both legs in that week or so but then worse for some months but then began to subside and for the past 3 months or so it's only really bad in my feet - toes to ankles both legs, and that hasn't changed. I call it a plateau. On different type of treatment now and just beginning to get it in my fingertips so I'm ramping up my B12.

Please be sure to check on all the B12 information in the PN area. Methycobalamin. Used not be able to get it in Au. I've been buying it in from overseas for years. Now I think some of the pharmacies are carrying it.

Have a good day.

I agree with Lara here, but assumed you would have read all the threads she describes. There's not many of us, perhaps we should pool our resources in 1 thread. I think the best active thread is the LeedsLad84 thread. He has extensive experience, has recorded his symptoms and has seen Neurologists. He would be a good person to take questions.

Take care. Let us know how you get on with your appointment.

Wait and see what you find out at the neurologist. Let us know. Thanks.