Subject: 9/11 Responder Neuropathy Symptom

To the 9/11 Responder Community,

In follow-up to our recent study on WTC related neuropathy we are conducting a survey to determine the incidence of neuropathy symptoms in responders.

You may have heard about our preliminary study that suggests that there MAY be a link between development of neuropathy symptoms (numbness, tingling and weakness of the hands and feet) and exposure to WTC Dust.

We need your help in our research to determine whether there is indeed a link.

It will only take a few minutes of your time to complete this online survey.

We also need responses from those who did not work at Ground Zero to use as controls for comparison . It would be helpful if your friends and family that were not at Ground Zero could complete the

survey as well.

We are using survey monkey and no personal information or other identifiers are required.

The survey can be accessed at

https://www.surveymonkey.com/s/wtcneuropathy

As always we are grateful for your assistance. With your help and participation we have learnt a great deal

about the unfortunate health consequences that occurred as a result of the brave work done in the aftermath of the 9/11

terrorist attacks. Working together we are hoping to gain additional knowledge that will help the 9/11 community.

Marc Wilkenfeld MD

Marc WIlkenfeld MD

Chief, Division of Occcupational and Environmental Medicine

Winthrop University Hospital
1300 Franklin Ave

Suite UL4-A

Garden City NY 11530

516 663 8890

Dr. Wilkenfeld,

Thank you for studying peripheral neuropathy among 9/11 first responders. Have you heard of any neuromuscular disorders? I have small fiber neuropathy along with autoimmune conditions. I am in the process of having my neuromuscular condition, that is possibly autoimmune, diagnosed.

I would appreciate any insight you or anyone else might have as from a medical standpoint, I am very complex. I have several 9/11 conditions that overlap symptoms.

Many thanks,
9/11 Hubbynwife

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?