Finally after 13 years :Study on exposure to 9/11 dust shows nerve damage in rats
 

I know this doesnt apply to or affect probably any other poster on this board unless they were at the world trade center site on or after 9/11/01 but it is important to me and several here know of my years long battle to have this recognized. .

Finally a study was conducted and the results were positive as i knew they would be if ever a study was done. A correlation is shown between world trade center dust and nerve damage. This is a personal vidication for me. Since 2004 i have been trying to get the various medical centers of excellance who monitor and treat world trade center first responders, area workers and residents as well as the National Institute of Occupational Safety and Health which now overall administers the world trade center medical monitoring program, to ask the question of participants : Do you have numbness, tingling, or nerve pain? They have so far refused even to the point of ignoring their own medical advisory board. Numerous neuro toxins have been identified in the world trade center dust. This is the cause of my peripheral neuropathy. of course more in depth studies will have to be conducted to affirm the link. but the link is there.

http://newyork.cbslocal.com/2014/09/...amage-in-rats/

MINEOLA, N.Y. (CBSNewYork) — A study on the short term effects of residual dust from the World Trade Center on rats showed some nerve damage, according to Winthrop-University Hospital Researchers.

The pilot study showed that exposure to dust from the debris of the terrorist attacks “affected the slowing of the conduction within the nerve,” said Dr. Marc Wilkenfeld, Chief of the Division of Occupational and Environmental Medicine at Winthrop-University Hospital.

Good for you.

judi

Let's hope--
 

--this not only leads to more research, but more funding for treatment.

Personally, given what was in that World Trade Center dust, it's ridiculous for anyone to be denying a whole host of medical consequences in those exposed. Being nearby or downwind that day, or the days after, is likely analogous to having gone swimming in a toxic waste dump; there's no question that toxic substances were aerosolized and not only breathed in, but absorbed through skin pores as well.

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

nerve dame 9/11
 

I was at ground zero on 9/11. I am now suffering from nerve damage to the extend that I can do very little. My condition went untreated for years, because the WTC clinics would not treat any one for nerve damage due to a list of symptoms or illness made by the government, and the gov. told the drs. if they treated any one for anything not on the list they would not be paid, and the WTC clinic would lose its funds. I was told this by a dr. at Roosevelt Hospital's WTC at a meeting with others fighting for proper health care for WTC victims.) Honestly, typing this is painful due to nerve damage.

Welcome artblop. :welcome_sign:

Hello Artblop, i also have peripheral neuropathy due to toxic exposures at the world trade center on the day of and the months following the attacks. My PN started in October of 2001 with numb big toes and progressed from there relatively slowly up my legs to past the knees and my hands and partway up my forearms. EMG/NCS has shown that i have severe axonal pn in my feet and lower legs and moderate to severe in my hands.

you are correct, the world trade center medical monitoring program will not treat peripheral neuropathy because it is not a recognized illness due to world trade center exposure yet.

maybe you could post more about your exposure, what you were doing and how it progressed etc. it would also be a good idea to fill out that questionairre from winthrop about world trade center exposure and nerve damage. they are currently still doing studies on the effects, which may help us to get nerve damage recognized as a world trade center illness.

The 9/11 dust, i saw documetary back a few years ago, people got numerous medical conditions fromt he dust. ASTHMA, leukemia, alot of cancer cases.

Thank you, thank you!
 

As a husband and wife that met at 9/11, it is encouraging to hear peripheral neuropathy may finally be recognized as a 9/11 condition by NIOSH. It is an established 9/11 condition by 9/11 NYS Workers' Compensation. We both have small fiber neuropathy confirmed by skin biopsy. Please keep us updated. The article and doctor's information was very helpful.

9/11 Responder Neuropathy Symptom
 

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

More info
 

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.

Ah, crap.
 

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.

there goes my potential foot model career

thank you! it is very much appreciated!

the amputation was postponed until today. it went well. keeping my fingers crossed that it doesnt set off an exacerbation of PN pain!

I was a 9/11 responder and have myositis, asthma, small nerve fiber damage, sleep Apnea, lung nodule and Carpal tunnel in both hands. It has been going on for 5 years or so and I am finally getting some diagnoses. from research I have found that many other 9/11 responders are suffering from Autoimmune disease and myositis. However I have not been able to contact or find these people. I have recently registered with the WTC Health program. I did not realize that many of my medical conditions are a direct result of WTC exposure. I am sure there are many more out there. I have recently gone out on SS Disability do to these conditions. I would like to hear from anyone who is having similar problems and how they are being treated.
John L Retired NYPD

here is an update o the thread you posted on. The same doctors did an additional study showing that the incidence of severe peripheral neuropathy in first responders is 15x higher than in diabetics. A press conference was held at Winthrop University Hospital on 1/14/16. im a first responder to the WTC also and I submitted a petition to the CDC Niosh on 1/5/16 to have peripheral neuropathy be added as a covered condition by the World Trade Center Health Program. Within about 60 more days I should receive a decision on that petition.

Right now autoimmune conditions, myositis, and peripheral neuropathy are not being treated by the World Trade Center Health Program.

They should be testing/treating you for asthma, sleep apnea, lung nodules, carpal tunnel.


This is a list of the currently covered conditions:

Aerodigestive Disorders (Airways and Digestive Disorders)
Asthma
Chronic cough syndrome
Chronic laryngitis
Chronic nasopharyngitis
Chronic respiratory disorder—fumes/vapors
Chronic rhinosinusitis
Gastroesophageal reflux disorder (GERD)
Interstitial lung diseases
Reactive airways dysfunction syndrome (RADS)
Sleep apnea exacerbated by or related to another condition described in the list of aerodigestive disorders
Upper airway hyperreactivity
WTC-exacerbated chronic obstructive pulmonary disease (COPD)

Cancer
(Note: A list of the cancers covered by the WTC Health Program and included on the List of WTC-Related Health Conditions can be found on the Covered Cancers page.)
Mental Health Conditions
Acute stress disorder
Adjustment disorder
Anxiety disorder (not otherwise specified)
Depression (not otherwise specified)
Dysthymic disorder
Generalized anxiety disorder
Major depressive disorder
Panic disorder
Posttraumatic stress disorder (PTSD)
Substance abuse

Musculoskeletal Disorders
(Limited to responders who received any treatment for a WTC-related musculoskeletal disorder on or before September 11, 2003, and meaning chronic or recurrent disorder of the musculoskeletal system caused by heavy lifting or repetitive strain on the joints or musculoskeletal system occurring during rescue or recovery efforts in the New York City disaster area in the aftermath of the September 11, 2001, terrorist attacks.)
Carpal tunnel syndrome (CTS)
Low back pain
Other musculoskeletal disorders
http://neurotalk.psychcentral.com/thread230889.html