[EmilySH]

Hi all,

I am new to the forum. I'm am happy to have a place to come and open up to others suffering similiar health conditions as myself. For more info regarding my case feel free to ask or visit my post in introductions. I am so new to all this so I'm still trying to educate myself on such an immense complex illness. I have not been dx with anything yet. Going to a neuro, hopefully soon. waiting for my referral to be processsed.

Anyway, my question is what are the possible odds that I am dealing with a hereditary neuropathy? Both my gmother and dad suffer from neuropathy. My dad is too stubborn and out of health insurance, he doesnt push for testing and this high dose of neurotin to deal with the pain. My grandmother was dx with PN in all four limbs and stopped there. She didnt do any more testing, saying she was too old and they couldnt do much for her. She has debilitating disabilities. Has not been able to stand in over 10 years, extreme muscle atropy, the list goes on and on. Oh and the spinal problems we all suffer are a whole other topic! I just wanted to know if any of you think there is a link or I'm totally barking up the wrong tree. I'm 26, & just need some kind of explanation. I know you all have been there so I dont want to sound selfish. I'm just worried about my future.

[Kitt]

What are your symptoms if you don't mind sharing. Thank you.

[dac122]

I am truly sorry to hear of your situation. You have come to a good place to seek help and understanding. I have a family history of oddball autoimmune problems. I have turn over just about every stone for testing and evaluation. I am now waiting for a genetic consult myself.

I'd say you have a few stones to turn over until you get to that point, but I would definitely look into it.

[Susanne C.]

The people here on the neuropathy forum do not all read the introductions on the main page, so please repeat your symptoms here.

You have more than enough family background to suspect hereditary neuropathy assuming you have similar symptoms. Only one parent needs to be a carrier and there are 50% odds of inheriting CMT. Two of my three biological children have it. Symptoms may not show up until later in life but it can show up in childhood, mine did, as did my eldest son's. Second son developed symptoms in mid 20's. Type 2, axonal degeneration tends to show up earlier and be more disabling but this varies. Severity can vary tremendously among family members.

It is a tough hand to be dealt but there are far worse things.

It is very important that you tell your doctor about your relatives, sometimes they don't even think of CMT unless you do, and then it explains everything. For me the neuro kept saying " It looks like cmt" but because I am not in contact with my biological father's family I forgot their symptoms, but they turned out to be the missing puzzle piece.