i have hereditary polyneuropathy, and i'm scared

Posted , 3 users are following.

Greetings,

I have a hereditary disease, polyneuropathy. After visiting the doctor - he told me there was no cure!

Is there any cure? Is there anyone who is also sick? I'm afraid the disease will only get worse ... very scared ...

Is there anything I can do? Will this be a solution in the future? Is there surgery?

It keeps people away from me - people who are precious to me.

Recently, things have gotten worse, I have stopped exercising completely, I don't feel it helps me ..

Before it got worse I had great aspirations and dreams - now I realize my dreams will not come true.

If the topic doesn't fit here, is there any other forum that it does?

thanks.

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6 Replies

  • Posted

    Is that a form of CMT ?

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    • Posted

      I do not know, but the symptoms are exact and identical. This is a disease that we have in our family, the older generation in the family did not diagnose it.

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    • Posted

      You should see a neurologist who will do genetic testing. It takes months to get the results back. Also EMG testing.

      An electromyogram (EMG) is a test that is used to record the electrical activity of muscles. When muscles are active, they produce an electrical current. This current is usually proportional to the level of the muscle activity. An EMG is also referred to as a myogram

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  • Posted

    I was diagnosed at 52 years old with Axonal motor sensory polyneuropathy in Dec 2003 following EMG tests and Nerve Conduction Tests. I suffered from the tingling, burning, pain in my feet, the usual symptoms. At the time I was told by the specialist that there was nothing I could do to help the situation. All the GP would offer was Amitriptiline, Gabapentin, or Pregabalin which have no effect until taking large doses. I was also told it was not hereditary at the time. I retired early at 55 determined to find an alternative to medications that just numbed the senses. After lengthy research, mainly from America, I started to take high doses of Vitamin B12 supplements and over time further different supplements. I am not diabetic, do not smoke or drink and therefore my condition was classed as idiopathic (in other words they hadn't a clue of the cause). I hope this reply is of help to you and I am willing to offer further suggestions. I refuse to take the medications offered by GPs and have managed so far to cope with the pain even though the condition has now reached my waist. Please stay positive. I am trying at present to set up a support group within our local GP practice.

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