What You Should Know About Ocular Histoplasmosis (take eye test)

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A family member was just diagnosed with this disease. Has anyone got any experience or knowledge to share? Not sure what to expect.

https://www.eyecenters.com/what-you-should-know-about-ocular-histoplasmosis.html

[flamingdem]

1. From my experience with eye issues I'd suggest

getting your family member to see the best specialist in the country.

You could see many practitioners but the best specialist is worth all combined.

Here's the way I get information, lots of googling and forums like:
http://www.uveitis.org

This site tries to have your sign up so I'll just paste:

https://www.inspire.com/groups/eye-infections-and-diseases/discussion/ocular-histoplasmosis-1/.

Health Communities

Eye Infections and Diseases Support Group

By khemp · November 30, 2011 at 11:43 am · 9 replies


I had my first experience when I was 30. I had the laser done which basically stopped the leaking and left small blind spot in center vision. 14 years later it became active in my "good" eye. I was informed that there was a new medicine called Avasitin injections. This is just a "band aid" to keep the vessels from swelling that bends the vision. I started at every 4 weeks, now every 5. The Dr. has told me that I may never need a shot again, but if it flares up he could not guarantee that permanent damage would not already have occured that cannot be fixed. I have at this time been going for 2 years. I once went six weeks. I got shot on a thursday and sat it became apparent it was still active. I now have a small scar from that but still have decent vision and will not go 6 weeks again and put my good eye in jeapordy. I have and just about every experience with the shots from a scratched cornea, the air bubble black floating spot (that goes away) , hours of pain, tearing, and then the best has been about 2 hours of being uncomfortable then being fine. There are tons of people every day getting shots in their eyes and this seems to be working for me. It is very costly for me and I am currently checking with my local Lions Club for some eye assistance as that is their top donations.
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uveitisguy

By uveitisguy
Reply 2679623
December 10, 2011 at 6:50 pm

your doctor can apply to the maker of Avastin for help paying for the drug. it might be that you would only have to pay for the doctor giving you the shot and needles etc. Avastin shots cost about 300 dollars total.
with presumed ocular Histoplasmosis syndrome, POHS, it is recommended that an ocular immunologist become involved to guide treament. these are highly specialized opthalmologists who have done extensive fellowship training in Ocular Inflammatory disease and Uveitis. there is a list of these specialsts at http://www.uveitis.org located in the PATIENT information section of the site. if you are in Ohio, there are several specialists. Dr Dino Klisovic is in Columbus, Ohio and is highly regarded as it Dr Opremcak. Dr Lowder is also in Ohio. if near Chicago, Dr Tessler is very good. if in Missouri, Dr Joseph Tauber is in Kansas City.

wishing you quiet eyes,
mike Bartolatz
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khemp

By khemp
Reply 2680838 · In reply to 2679623 by uveitisguy
December 11, 2011 at 12:04 pm

thanks for the information. I am suprised my Dr. did not tell me that when I asked if I could do the scan every other visit and he said thats like him working with one hand behind his back. He said he will do scan every time but charge me every other because he does not want my sight in jeopardy due to finanace. I am 2 hours from chicago and thanks for the link.

greatly appreciative

Kelley
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uveitisguy

By uveitisguy
Reply 2682914
December 12, 2011 at 11:34 am

my comment on payment is regarding the DRUG cost, not the doctors costs. it is kind of him to charge for every other test but if you can get into a national Institute of health Drug Trial, ALL costs would be paid for.
check on this through a search of the Trials section of the National Institute of Health Website. the National Eye Institute is funding many trials at the moment. do you quailify for medicare or Medicade? do you have Social Security Disability?
these things might be of help in paying for treatments and medications when used in a hospital setting through transfusion etc.
Dr Goldstein is at the University of chicago and may be of help. her contact information can be found in the PATIENT information section of http://www.uveitis.org

take care,
Mike
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khemp

By khemp
Reply 2700532 · In reply to 2682914 by uveitisguy
December 20, 2011 at 12:26 am

I do not quality at this time for medicaid. I can still see and only 45. I so very much appreciate this information. Thanks again.

Kelley
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KV327

By KV327
Reply 2850214
February 19, 2012 at 10:18 am

I found out i had OHS in my right eye and the next day had laser surgery to cauterize the leaking vessels, and it completely ruined my vision in that eye. 11 years later (2 years ago) i got it in my good eye. The next day i went in, and since technology had improved, i got a shot directly in my eye to "dry up" the blood leakage. I was told the shot would dry up the wet spot and enable the doctor to pin point the laser directly on the leak instead of guessing where it was(thus, saving some of my vision). Then a few days later, maybe a week, I went in the had laser surgery in my good eye and it too has severly diminished my vision. Not being able to see anything in my right eye, and only being able to see the outer half of my vision in my left eye, I'm about 75% blind. Talking with my wife, we dont believe we ever heard of Avastin. Though we did ask about alternatives, and the doctor said it was too late. No option for a shot in the eye to save any vision. I went to the eye specialist once a week, then once a month and now am up to 6 months between Dr. visits. I anticipate hearing "dry and normal"and being sent on my way home. Having been told my vision will never get any better and will only get worse, it was suggested to me by my personal doctor and my eye specialists that I apply for disability. I have not driven a vehicle in 2 years. I have jumped through the government doctors hoops and have to go meet with another one on March 8, 2012. I just dont understand these people. Having had back problems for 25 years and two operations, one at 22 and one at 33, i have dealt with quacks before who told me I had nothing wrong with my back. Others told me to come back every other day and they could adjust it, take xrays and so forth. It was only after I had my personal doctor refer me to a back specialist that I was told I had a herniated disk in my back. The only thing that would fix my back was an operation. Now all this with my eyes and people and doctors look at me and because I look normal on the outside, they assume I am fine. I tell them "I can't see and at age 44, why would I fake anything that will take away my drivers license, my freedom and independence?" I also assume because they are being paid by the government, maybe they might not believe me and believe I am faking and thus deny me disability. The point I wanna make at the end of my ramblings here are.. please get checked out by as many reputable doctors that you are able to. You can never have enough 2nd opinions because someday it might come down to your health/vision and some government doctor who is trying to deny you of your benefits. Just because the bone is not sticking through the skin, does not mean you dont have a broken leg. Your vision is one of the most important things you have. 2nd, 3rd, 4th opinions might seem like a hassle, do your self a favor and get 9th-10th opinions.
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uveitisguy

By uveitisguy
Reply 2851053
February 19, 2012 at 3:46 pm

i have to agree with you and Yes these doctors that you are sent to work for an INSURANCE company. the main purpose of them is to DENY you coverage because the insurance company would go broke if they had to pay all claims.
get a Disability lawyer on your team to help get this approved, make sure you re apply once any denial is made within the alloted time or your claim will automatically stop.
if you win on appeal, your monies will be paid to the day you applied without the 5 months normally withheld. medicare starts 2 years from that date as well. you may also qualify for SSI of about 600 a month depending on your income. you need the SSD approved to get Medicade and you can apply for that if you win and use it until your medicare is available.

I had to go to court to get my SSD approved years ago so I can empathize. one thing to make sure is in your record is any treatment for DEPRESSION. all of this is really depressing and that combined with your vision and arthritis MIGHT help get your SSD approved, I know it did mine many years ago as they have to consider all of your limitations.
if you served in the Military apply to the VA too for care.

where do you live? I might be able to suggest an Ocular Immunologist to consult with.


take care,
mike
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uveitisguy

By uveitisguy
Reply 2851058
February 19, 2012 at 3:50 pm

Michigan

Maria Jancevski, MD
Oakland Ophthalmic Surgery, P.C.
800 S. Adams Road, Suite 201
Birmingham, MI 48009
Phone: [phone]
Fax: [phone]

4600 Investment Drive, Suite 130
Troy, MI 48098
Phone: [phone]
Fax: [phone]
email


this specialist trained under C Stephen Foster MD at Harvard. she is the BEST in your State in my lay opinion and I have had very good feedback from those I've sent to her.
tell her that you were sent by DR Foster's support group. I am one of the facilitators for the support groups teaching about this and MODERN treatment. You will get an Expedited appointment my telling her this.

Mike Bartolatz
http://www.uveitis.org
http://www.uosg.org
http://www.parsplanitis.org
http://www.iritis.org
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KV327

By KV327
Reply 2857676 · In reply to 2851053 by uveitisguy
February 22, 2012 at 10:11 am

I do have a lawyer to assist in my claim of disabilty social security. I filed my claim and was denied a few weeks later. Then I filed my own appeal and then hired an attorney. I have been fighting this for 19-20 months currently. I have two opthamologists. John Trittschuh (sp?) and Jeff Zheutlin. Each has done one of my eyes. Currently seeing Zheutlin. I have been told that my assets are too great to receive SSI. My wife works her butt off and carries us on her insurance at her employer. I am unable to work due to my inability to see to drive, along with back issues. They have asked if I am depressed, which I believe that I am. But I said I wasn't. I honestly dont think I will step infront of a bus or anything, but I can't go 30 years (if I live to be 74) living this way. I had a job that I loved and then had my eye issues. I believe that they think I am one of the millions who have been on unemployment for years and now it is running out, and I am to lazy to get a job and have applied for disability. I want to work! I would rather work! Losing the freedom to come and go and the independence to actually go visit and work and get out of the house is something I wish no person would ever have to go through. Hoping that someone will pull in my driveway and ask me if I want to go for a ride gets old after a couple weeks. I realize everyone has to work and has their own lives to live, but when you have to rely on others, you often end up let down. I dont know how I got off on this "whoa is me" rant, I just wanted to advise the person who started this thread to get as many 2nd opinions as possible and, no matter how old one gets, NEVER let anyone take your driving privilege away.

Dr.John Trittschuh is from Eyecare Physicians & Surgeons and Dr Jeff Zheutlin is from Vitreo-Retinal Associates

My personal doctor said these two were among the best in my area, which I can neither confirm nor deny. The Dr that you posted is a couple hours away from me, too far to have regular visits with.

Kevin
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uveitisguy

By uveitisguy
Reply 2858116
February 22, 2012 at 1:01 pm

usually the ocular immunologist will work with your other doctors so you would only need to see them a couple of times a year.

I'm sorry the SSD is causing such problems for you. I had to go to trial years ago to get mine approved. you need to get some counseling for the emotional stuff going on and for depression. It is hard for a guy to admit that he is depressed but there is help.
just about every guy feels the way you do; but, you worked for years and deserve the SSD to help get you through this. that's why SSD was started in the first place but they deny almost everyone on their first and second appeals. I do hope that you can get some type of employment but you will require training. often there is a department of Vocational Rehabilitation in your state that can help. there is also a dept for the blind in many states as well. they might be able to help you get some retraining if appropriate for you. Venting is good and I do empathize with you.

Wish you the very best,
Mike
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2. Wow...thanks so much for this info and links! nt