Looking for support: New to group . I... - Neuropathy Support

Neuropathy Support

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Tummypainz profile image
5 Replies

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 .

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Tummypainz
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5 Replies
orangecity41 profile image
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 profile image
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 profile image
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 profile image
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 profile image
Kaykhellstar

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

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