Hi there
Just to let you know that this thread is from 2014, and about an article from then.

The doctor is not a member here.

Hi, I wasnt aware that peripheral neuropathy is an established 9/11 condition by workers comp in NYS. My job wasnt in workers comp system so im not that familiar with it. If you have a link or anything that you can send me with that information i would appreciate it.

Dr. Wilkenfeld is affiliated with Winthrop Hospital in Mineola, Long Island. They are still doing additional research there to establish a definitive link between the dust and peripheral neuropathy. I will see one of the doctors involved tomorrow. ill ask how its going. what neuromuscular
condition do you have, i can ask them that as well.

i talked to one of the doctors today who is involved in the study on wtc dust and peripheral neuropathy. Their paper should be published in just a few weeks. It is going to help. Also i asked him about wether neuromuscular diseases were included and he said no, only peripheral neuropathy, which is what i thought being that you have to eliminate variables and narrow your focus in a study

Hello,

Please post a link when you can with this article. I was established with peripheral neuropathy by the 9/11 NYS WCB. My records were from 2003. I don't have any literature.

The neurologist is trying to diagnose my neuromuscular disorder. I have several undiagnosed symptoms that may be one or more conditions. I already have an autoimmune disorder that's not yet covered from 9/11. An autoimmune neuromuscular disorder is a possibility.

I'll post an update when I know more. Thank you so much for inquiring on my behalf.

9/11 Hubbynwife

coincidentally 2003 is also when i was diagnosed officially with Peripheral Neuropathy through an EMG/NCS. My feet started going numb in October of 2001 at the same time i had numerous respiratory infections and developed chronic asthma.

The World Trade Center Health Registry is sending out questionnaires to people who have autoimmune diseases and were at the world trade center. They are trying to establish a direct correlation between exposure and autoimmune conditions. You should contact them and have them send you a questionnaire on it. Do you get their regular surverys every few years?


Are you in the World Trade Center Medical Monitoring Program, now known at the World Trade Center Health Program?

Hello,

Yes, I am in the WTCHP. I have been doing the surveys since 2003. I now have an anterior lesion on T11 in the bone marrow of my spine. I go for a bone scan next week. The "fun" never seems to end.

I appreciate your updates. I just turned in this years survey. It would be great if they began coverage. The medication is outrageously expensive.

9/11 Hubbynwife

i'll post when the paper comes out about the link between the wtc dust and peripheral neuropathy.
The fun never ends for me either. I was doing balance therapy this summer because i have been losing my balance easily and falling. Unbeknownst to me, I injured my toe but couldnt feel it because my feet are numb. The toe became infected and the infection went into the bone- osteomyelitis. im having part of the toe amputated on tuesday.

Hope the surgery goes without complications--I often worry more about people contracting infections as a RESULT of hospital surgical procedures. Make sure they treat prophylactically (I know you know how to self-advocate).

yeah me too. ive been taking antibiotics for 4 weeks and will continue after. thanks!

Good luck Echoes... Keep that foot elevated too. The feet get so infected so quickly! Even when I was young (12) I had 4 stitches in my foot (out of 50+) get infected!

I'll be thinking and rooting for you.