CFS/Fibro Specialists in Northern IL

[subic_marine]

Hey all,

I've been a lurker here for about the last year, and finally decided to jump into the fray.  I need some help finding a chronic fatigue / fibromyalgia specialist in northern illinois.  I've been receiving treatment through the VA at Hines, but for purposes of disability, I believe my 3rd party company would rather have an outside doc to talk to.  Additionally my PCP at Hines seems unwilling to do anything regarding disability.

Any help would be appreciated!

 

 

[Guest]

You need to see specialists in the field of Rheumatology, Neurology and Internal Medicine. They are the ones that can review your military records, treat your symptoms, observe your condition and finally make the diagnoses that you need.  VA doctor can do the same, you really don't need private doctors opinions.  VA doctors maybe more familiar with your symptoms than private doctors but it is your call.

http://www.publichealth.va.gov/exposures/gulfwar/medically-unexplained-illness.asp

Edited April 28, 2016 by pete992

[Buck52]

I agree with pete992   he gives good advise.

jmo

.............Buck

[subic_marine]

Thanks guys.  I should have been more specific in my initial post.  

I'm looking for some actual doctor name drops.  I had a fantastic rheumatologist, who moved out of state in August of last year.  That's when I transitioned management of my conditions to the Hines VA hospital.  

I agree with you Pete, that the VA should likely have a better handle on the gulf war presumptives, but the fact is that they don't ... at least the ones at Hines.  They're still pushing graded exercise therapy and cognitive behavior therapy for chronic fatigue ... therapies that have simply not worked for me, and were sidelined years ago by most "real world" doctors in the field.

To make matters worse, my VA PCP doesn't seem to grasp the difference between VA C&P and my third party disability insurer.  My VA Neurologist is a resident out of Loyola, and I have no direct access to her.  Months between appointments simply isn't cutting it in my mind ... I just feel I need some docs who are actually on the payroll.

I'll keep looking, but if anyone has names of good rheumatologists and neurologists who are accepting new patients, I'd appreciate a hook up!

Sorry for the novel ... it's just ... frustrating.

 

Thanks again.

[Rattler]

Well if you were in Alabama I know of a rheumatologist who is probably one of the top ones when it comes to fibromyalgia. He holds seminars once a year that other docs come to from all over. He treated me for 20 years.  Having said that you said that Neurologist is a resident out of Loyola. I am ordinally from that part of the country Loyola has a good rep so I would start there and interview Doc's. Tell them what is going on and what you are trying to do and treat. If they are not interested of cant help ask them for a referral to someone who can in your area. Rheumatology is a small group of people and everyone knows everyone. 

[El Train]

On 4/28/2016 at 8:38 AM, subic_marine said:

I agree with you Pete, that the VA should likely have a better handle on the gulf war presumptives, but the fact is that they don't ... at least the ones at Hines.  They're still pushing graded exercise therapy and cognitive behavior therapy for chronic fatigue ... therapies that have simply not worked for me, and were sidelined years ago by most "real world" doctors in the field.

 

Maybe the VA has a doctor in their system that knows these symptoms (Fibro/CFS).  Just not my VA.  Nor do they have a grasp on TBI.  Too complicated.  If you have been getting treatment for these symptoms (taking meds, getting acupuncture, chiropractic procedures, etc.), then you can get the diagnosis for these by a MD.  Doesn't necessarily need to be a specialist like a Rheumatologist.  Although a Rheumatologist is preferred.  I used Dr. Ellis in OKC, OK.  He examined my medical/treatment records and did an in person examination.  I then got diagnosed with Fibro/CFS.  He is a forensic environmental MD.  He teaches C&P examiners.  He also helped me with a number of other diagnosis the VA had no clue about.  The VA needs help with these items.  I provided that help for them at my own cost.  Totally worth it.  Does the VA like it?  No they don't.  Not my problem.

I got approved at 40% Fibro and denied CFS due to PTSD and Fibro symptoms overlapping (pyramiding).  You will not get both of these symptoms approved.  If you do, it's likely a raters error.  PM me if you have any other questions, or just ask away.