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I have been looking for a doctor who knows about NF1 that accepts my insurance. I have Illinois Health Connect formally known as Illinois HFS or medical card. I called them to ask and all I was told I could do is call around,
Check on the back of the card....is there a 800 number that u can call to get a list of Drs? Or maybe on the website? If this is State Ins.....the state should help u find a good Dr.
Good Luck
There isn't a number. They don't send a card since state medical is a month by month thing since some people's eligility changes from month to month.They send a paper each month with the eligible people in the household.The state told me that it is up to me to find a dr with experience in a certain medical condition.
iowa city will, there alot of people that go to iowa city they will even pick u up in a van if have no way 356-1616 area code 563 ask for gentics
Thanks browneyes_39, the insurance will not cover Iowa, just Illinois since it is the Illinois state medical card.
I am on Missouri Medaide, and finding a doctor is hard. I Mostly stay at Barnes they have a NF clinc and so dose Cardnal Glenn Childens where I use to go as a kid.
I may have found a Dr who takes the card. He is an internal medicine doctor. No neurologists are close enough to go to, there were only two in the whole state to go to.
Well the internist said he couldn't help me since I NF1.
Found a Dr at Loyola appointment is 6 months away. A very long time to wait.
Hi Sapphire-Dolphin,
You should be able to go to Iowa City on the Illinois Medical Card, at least you use to be able. I went there for years. I live on the Iowa/Illinois border along the Mississippi River and had a Illinois medical card for many years. Things finally changed and I finally graduated from college and now have a job with insurance. I did most of my doctoring in Iowa with my Illinois card.
The website to get the information from and a contact number is:
http://www.nfinc.org/meddir3.shtml
- this website shows all the special clinics for NF. Most clinics do accept state supplemented insurance. Iowas City is:
University of Iowa Clinic
Dept. of Pediatrics/Genetics
200 Hawkins Dr.
University Hospital
Iowa City, IA 52242
Phone: (319) 356-2674
Fax: (319) 356-3347
Contact:
Val Sheffield, MD
Also in Chicago is Dr James Tonsgard, one of the absolute best NF doctors in the country. They also take the card and have a NF clinic on Saturdays (I think it is once a month). The website is:
http://www.uchicagokidshospital.org/specialties/neurology/patient-guides/ne urofibromatosis/
Dr Tonsgard's page contains all the information you need to make an appt and be seen. If you aren't afraid of Chicago traffic I highly recommend him. He is an amazing doctor. His website is:
http://www.uchicagokidshospital.org/physicians/james-tonsgard.html
- he is a very compassionate doctor and really does wear a bow tie!
Hope this helps. You shouldn't have to wait so long to be seen.
jilliangail
Dr Tonsgard is not listed with the state. I called the Illinois Health Connect hotline and he was not listed. Only doctor I can get into see is at Loyola in September 2009, I wasn't even given a time, just a da I do know who he is but can't get into him as he is not with Illinois Health Connect. I noticed when calling the over 500 nuerologists that 498 no longer took state medicaid, although the doctors' websites said they do. alot of docs stopped accepting it because the time it took the state to pay. Also driving from Joliet, Il to Iowa is a bit far for us, we'd be stuck there with no way back. I have a pcp that had an MRI of my hip and groin area and my hip pain is "nothing" and a neurofibroma I have in my groin area which I knew of is apparently " unknown object with unknown cause" I told that dr the cause if NF1. He comes back with " I highly doubt that would be the cause, neurofibromas don't grow there". GRRRRRRRR!!!!!!!!!!!!!!!
Also when I try to request an appointment with Dr Tonsgard it states "Child's name". I am looking for an adult neurologists that will deal with NF1
Sorry to post again Dr Tonsgard does not accept medicaid
Im having a hard time finding a dr too.. Im on florida medicaid and they dont cover any specialist in or out of town just a basic pcd of their choosing.. my ex hubby put me back on his insurane but since pre-existing I cant go to a good dr and the closest nf dr i have is in alabama or miss.and they told me they will not pay for tht... and people wonder why im so depressed and suicidal over my NF,when I try to seek help and treatment state medicaid or insurance will cover it.Someone or something needs to be done to these cocky asshole insurance companies and state welfare medical... it is ludicrous to deprive people from help they need.
He use to accept it and he saw my entire family. It isn't him you need to go through, you need to go through the University of Chicago, not his private office in Palos Hights.
I didn't know that though about not taking Medicaid. I think the University has to because they are state funded and under the law have to. I'd call the University or click on the link to make an online appt. You don't have to be a child to be seen by him or in Iowa City. The clinics just are in the Children's section of the hospitals and medical clinics.
Try this:
Request an appointment online:
https://www.uchicagokidshospital.org/request/index.html
or call HealthLink at
1-888-UCH-0200
There is also some kind of clinic in Peoria, or at least there use to be. Face it, the health system sucks, and it really needs to be reformed.
I really hope you find something soon. It's nuts to have to wait this long. I would call Iowa City though. It is a state funded and last I heard they still took Illinois Medicaid. That could have changed though too.
I'll call again, but was told back in September that he doesn't see adults or take Medicaid, this was in Chicago. Iowa City is way too far.
I have been doing research on types of assistance for people with certain conditions. There is all types of transportation, and free medical care too. check around a few websites such as: http://www.cureourchildren.org/financialassistance.htm
there are all different organizations ready to help!!! you might not be eligible for but then again you never know if you dont check it out! this is just one site that listed a lot of good resources.
Thanks MyJosie, I know alot of resources are funded for children. at least the ones I find are. I do have state medicaid, just don't think I will travel out of state to see a dr. I know there are doctors in my area, it is just a matter of who takes the insurance, then even if they do accept it they may not be taking new patients. I do have an appointment in September at Loyola in Maywood, Illinois.
It is very difficult to find a doctor that will accept medicare/medicaid patients. Unless one has an established relationship, very few docs will accept new patients simply b/c of dealing with the government. Think it bad now, wait until the US government runs the entire health care system.
I have the illinois medical card for my son, but he also has primary ins.. we went to the childrens hospital in st louis, MO
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