Originally Posted by abbyrition (Post 974901)

I was diagnosed by my primary care doc with idiopathic peripheral neuropathy of the large intestine. (though there have not been any tests done that confirm this, so I'm not confident) I struggled with pain, negative tests of all kinds, situational depression and anxiety, exploratory surgeries, and a whole slew of doctors that didn't care to listen to me. Finally, when my primary put me on Cymbalta I found some relief. I changed my diet to a vegetarian one and have been able to manage my flairs without meds for two years... Until new stuff popped up. I nev had the tingling or numbness so many on the board mentioned, until now. I took my youngest to see Wicked - the musical. It was wonderful, but the seat was tight. I had my legs crossed and arms resting on the arm rest. My legs started to fall asleep, so I had to keep changing positions. Then my arms started tingling from the arm rests. It became quite uncomfortable to sit through the show. The tingling became intermittent throughout the rest of the weekend, and when I went to work Monday it became painful. I use tweezers in a repetitive motion for detail work. I called out of work to let my hands rest. I only use the tweezers in my right hand, but both were tingling and painful to use. After a few days the tingling lessoned, but then my thumbs lost all function in both hands. I couldn't use them. I called and scheduled an appt with the neurologist. I have a nerve conduction survey & EMG scheduled to provide more answers. The use came back in my thumbs, I was fired, and now I'm just trying to keep my hands rested to not destroy the nerves any more than I have.
The girls know I don't go to work anymore, and they know I am having issues with my hands. (I will often have them wrapped in ace bandages, as the compression seems to help when the pain is bad.) I haven't given them any more info, as right now I just don't have it myself. On another thread someone mentioned that my newest symptoms sound like HNPP, I checked the info on that, and almost describes my new symptoms to a T. So, I will wait on the tests before I tell the girls anything else, or even get worried about them. HNPP is hereditary, and I am uncertain on my feelings of testing them if this is my diagnosis. Right now, I'm taking one day at a time. Concerned about any future employment prospects if my hands aren't reliable. Also, therer's the concern of pushing myself too far and doing permanent damage if I can try to gain employment again. I'm concerned the tests the neurologist is about to do will show negative, and I'll have no reason, or explanation for my issues, as has been my past history.
I'm sorry I didn't have an easy answer to your question, I'm just not that far along in the process with this new symptom. I assume that's also why I asked this question of this forum. Without a clear diagnosis yet, I am simply a jumble of symptoms, and fear. I don't want to transfer fear inadvertently to the girls in trying to explain something I just don't have the answers for.

Originally Posted by Susanne C. (Post 974665)

I agree with the above posters, the more info the better, as kids have a tendency to imagine it is worse than it it and you do not want them to be afraid. Also, you will need their help. Mine 14-29, 5 of them, the 3 youngest at home still. I am pretty disabled so they have to help, although their father helps a lot.

I have not been following your symptoms, Abby, any chance of yours being a hereditary neuropathy? I passed this on to my eldest son, 28, and he has trouble walking and extreme ankle weakness. The possibility of passing this on to a beloved child kicks this whole issue up in intensity. I m very thankful our two youngest are adopted.

Originally Posted by Kitt (Post 975076)

How was your son diagnosed? Was there DNA blood testing? If it is CMT then he would have the same type as you even though symptoms vary greatly even within the same family.

Originally Posted by Susanne C. (Post 975102)

We didn't pursue the rest of the Athena panel since neither of my neurologists thought there was much point, as regardless of the variant there is no treatment. My son presented with foot slapping and very weak ankles from childhood, whereas I was more clumsy and uncoordinated, unable to run or jump. Even with the same type, the symptoms and onset can vary, as you said. His feet and arches, at 28, are as high and contracted as mine at 51. He does not have pain yet, but I didn't either when I was younger, and later I blamed it on varicose veins, arthritis, and phlebitis until finally getting a diagnosis at 47. I did not mean to imply that he had a different type than I, of course, only that if Abby's does turn out to be hereditary talking to the children about it is more complicated.
My older daughter (29) does not appear to have it, and neither does my younger (26) year old son, but they are very sensitive about discussing it and do not want to consider the possibility that they may be affected. It is a very touchy issue for them. My daughter has a baby and wants a large family and does not want to think about passing anything like this on to them.
My family history was incomplete, but I do have a half sister with a severe case, childhood onset.

My son's case was confirmed in China, where he lives, through examination and family history, not blood testing, so we do not have the exact variant, only that it is axonal.

Originally Posted by abbyrition (Post 975152)

Thanks Kitt for the HNPP links. When you posted the one on the other post of mine, I read through the whole website. It sounds just like me right now, kinda scary even. If I do have HNPP or any hereditary PN I will need to do some research on how testing positive will affect mine and my girls ability to obtain health and life insurance in the future.

I asked my primary for a dna test 2 years ago. He said no "because they are very expensive and not covered under insurance". I went home and looked up the cost. I found one for $350.00 but they would not give the results to you directly, you had to get the results sent to a doctor to read them for you. I have spent way more than $350 on proceedures that didn't help, so I started hunting down a doctor that could read the results. All I found were doctors that dealt with cancer, and refused to see me as I was not part of their speciality. So I let it go, and just dealt with managing my PN... I may be a bit miffed if I get the DNA test now and it comes bqck positive with information that could have saved me agony, anxiety, and strife the last 2 years just to have a diagnosis... (i have also seen where the dna tests have gotten much cheaper right now.)

Originally Posted by abbyrition (Post 975153)

So all of your children know about the hereditary possibility, one is showing symptoms, but none have had the dna test to confirm either way? May I ask, if you know that is, Why none of them decided to test? I would like to think, I would let my kids choose if they wanted to be tested as long as they not showing any symptoms, but the not knowing might just drive me mad or paranoid.