Looking for support

[Tummypainz]

New to group . I have hereditary neuropathy. My dad has had it for years and has it bad , he is not diabetic and neither am I . I am a 49 yr female . Up until about two weeks ago my neuropathy was fine as in manageable . I am on a low dose of Topamax. The last two weeks it’s gone through the roof ! Pain unbearable in my feet , tingling in my hands and face and upset stomach ( not sure if that’s a symptom) I am only have to work three hours a day and come home in tears as I am on my feet I have a doctors appointment today at 10:30 . I just don’t know what to do . I see my dad and know what my future is and it’s depressing and I try not to think about it but how can I not ? Just here looking for support of any kind .

[orangecity41]

I have hereditary motor sensory neuropathy and peripheral . I shortly will be 80 years old. I take gabapentin and it does help. I have episodes of pain and tingling in feet and hands. I am only able to take tylenol for the pain. Hope all goes well with your appointment and you get some relief.

[Tummypainz in reply to orangecity41]

Thank you for your reply ! My doctor has put me on 25mg of Lyrica 3 times a day and it started working within 30 mins ! And I have to go and see my neurologist again . The Lyrica hasn’t taken the pain away completely but it’s to the point now that I can at least function ❤️ Hope you have a wonderful day !

[orangecity41 in reply to Tummypainz]

Great that Lyrica is helping you. Wonderful we have some meds and good neurologists. Neuropathy can be a challenge. I also have Chronic Kidney Disease (moderate level) to enter into the picture. Hope you have a wonderful day too.

[Cb1963]

If you're not getting much sleep, there is a medication called mirtrazapine which is used for depression, but it works on the nerve endings and helps aid a quite a good night's rest, its a horrible condition, I wish you well ,best of luck

[Kaykhellstar]

Hi i have HNPP with CMT1-1REP has anyone else got. hereditary motor sensory neuropathy with liability to pressure palsy... ?