Quote:
Originally Posted by Kitt
You are correct to be concerned about how testing might affect being able to get health insurance for your family in the future. You probably could get it but it would cost big bucks to have it. I don't believe they can deny you or put a waiver on it as they did before but again it would probably cost a lot of money. This has been true of other health conditions as well.
However, if you work for a large company, then you will get health insurance without any health questions. But if you have to get individual health insurance then it can be a huge problem. This is probably true for life insurance as well.
If in fact you do have HNPP or a type of CMT there is no cure/treatment at the present time for any of it. Lots of research is being done but there isn't anything at the present time. I chose not to be tested but family history, EMG/NCV testing (I really had nil for symptoms) and a good neurologist (an expert in CMT) told me. I never saw him as a patient but I told him what my EMG/NCV showed and about my family history at one of my support group meetings. However, I already knew as I can trace it way back in my ancestors. You can just deal with the symptoms as they come along. You can be young, old, or in-between before any symptoms might become evident. You may never have any evident symptoms but still can pass it on. Pretty much the same for HNPP. It is a personal choice after weighing all of the information. Personally, I would not get tested. If symptoms come along I just deal with it. That is what I have done. JMO. It is a personal choice.
I wish you well.
Kitt
Charcot-Marie-Tooth (CMT)
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It's been 7 hard years undiagnosed for me, so I'm confident I would want to know... Even if it's just to know I can stop spending time and money trying to figure it out. I am curious about the working and insurance parts that you said. Over the past 3 years I have lost 3 jobs to my flairs. The first one I was at for 5 years in management, fairly stressful. They wouldn't approve my short term dissability becase the only proceedure I had was a colonoscopy during that time. (that doesn't even begin to cover my symptoms list... But was my only proceedure.) so I was let go. I could have fought it leagally, but that takes more time and energy than I had when I was that ill. It was a struggle just to get to doctor's appointments. So, I waited out my flair, blew through my savings, and found another job. I was there about 5 months. It started out full time, then down to part time to help me manage my symptoms, and doc appts, until I was scheduled only one assignment, and I was wearing myself out doing so. So I went to a less physically demanding job. I became a crafter for a small local business. A dream job. Low stress, low pay, but it was something. Until a flair. I moved to part time. And now with this new symptom of not being able to use my hands, particularly in a repeatitive motion - I was fired. (I would have had to quit anyway, because I simply couldn't do the work with my hands.) so now I'm back blowing through the rest of our savings, contemplating if I can ever use my hands again, or if I have done some serious damage. And that makes me wonder what job I can get that will let me work around the kids schedule, my doctor's schedules, and not be physically demanding, or require any use of my hands (because if I get full use back to normal, how can I take the risk of permanent damage, knowing (if it does turn out to be HNPP)?
What jobs are there out there like this? Let alone provide health insurance benefits?
04-15-2013, 04:11 PM
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