Lynn, Welcome to the group!

Post here to exchange iritis general information and support with others.

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Mike Bartolatz
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Lynn, Welcome to the group!

Post by Mike Bartolatz »

Lynn BurnettWhat is the sum?:7Eye Symptoms:Started approximately 18 months ago; Photophobia which has graduated to extreme (outside is totally disabling even with most dark, polaraized sunglasses-without sunglasses total "whiteout"), hazy or smoky vision that intensifies with light (indoors or outdoors), wierd artifacts in vision constantly (i.e. amoeba shaped objects, orange flashes and squiggles and sensation of flickering lights), distortion of vision like looking through a piece of wavy antique glass. These symptoms are constant and have worsened steadily over the last 18 months. I have a confirmed diagnosis of AIR (Auto Immune Retinopathy) by diagnostic testing (ERG, Goldman test, etc.) and bloodwork tests done by the Oregon Lab which all of you seem to know about. Initially took 6 weeks of Prednisone and 4 weeks of Valtrex. Those began on 11/30/09. In December '09 started steroid injection under each eye. The second round was a couple of days ago. So far, nothing has helped the symptoms. Add friend Add
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Lynn, Welcome to the group!

it sounds like you have extreme vitritis and protein (flare) present in your vitreous humor from your autoimmune retinopathy.
are you going to Casey Eye institute in Portland, Oregon and under the care of Dr Rosenbaum and Dr Suhler?
often immunomodulation using chemotherapeutic drugs is required to control inflammatory retinal disease such as AIR.
Please know that we are here to help you through this. I've been to Casey myself as I live in Tacoma. now there is an Ocular immunologist in seattle.

wish you the best,
Mike
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mrsgary
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Re: Lynn, Welcome to the group!

Post by mrsgary »

Lynn, the photophobia can be caused by some medicines and extreme doses of Vitamin A if you are taking it. Light got much more tolerable after I stopped taking Topamax and Vitamin A in mega doses. We are waiting to hear from Liz about how her appointment went this week at the University of Michigan.

Good luck to all of us.
mtbargeman
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Re: Lynn, Welcome to the group!

Post by mtbargeman »

Lynn-

I hope you can get proper care from a specialist qualified to deal with these diseases. It was about two years before I got any kind of decent care, because I didn't know any better. I ended up with a host of serious visin problems due to Uveitis, and am now legally blind. Many of my symptoms were like yours. I still must wear dark green polarized glasses outside, even on a cloudy day, because of photophobia. SOmetimes, I wear brown ones inside because the light is excruciatingly painful. Heat makes my vision worse until I cool down. This is due to chronic optic neuritis. If I had gotten care sooner, I would not be in this shape. Please make sure to see Dr. Rosenbaum or Dr. Suhler there in Oregon ASAP. YOur vision cannot regenerate itself, usually, even with chemotherapeutic drugs. There may be symptoms that leave, and that will improve the vision, but once the eye is truly damaged from disease, its damaged, and there is no return of what you have lost. And that loss can sneak up on you really quickly.

I don't tell you this to scare you, or make you feel like there is nothing to be done. I tell you this because I don't want another single person to lose the vision I have, or to lose the independence I have, or any of the other things I have lost due to poor vision. Please, look into Dr. Rosenbaum, and make an appointment ASAP. A good Rheumatologist might not be a bad idea, either.

Good Luck and Good Care,

Mary
Mike Bartolatz
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Re: Lynn, Welcome to the group!

Post by Mike Bartolatz »

Mary,
DR Rosenbaum is a rheumatologist. he isn't an opthalmologist but Eric Suhler is. Rosenbaum knows how to use the slit lamp and has treated allot of uveitis cases with Suhler and others. I don't know the full extent of their abilities for some things however. CSF has had to take on some of their patients such as Renee's daughter Alexa and Sue W's case both of whom now see very well with proper IMT when the prognosis was blindness like yours.
Sue travels to California at the present time to see DR Levinson at UCLA as it is allot closer than Boston. For AIR csf sent me the names of two specialists in California not on the Uveitis specialist list if Lynn would like them I'll post them here.

I just wish I could have gotten you to a real specialist early on in your disease processes which might have allowed a better outcome for you. Our healthcare system sucks.

wish you the very best my friend,
Mike
Mike Bartolatz
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mtbargeman
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Re: Lynn, Welcome to the group!

Post by mtbargeman »

Sorry about that. I should have looked into that a bit futher before I posted. :oops: Still, I do want the best for our members here, and I am searching for a way to get to Baltimore myself. I am certain I will find a way. Until then I am holding most of my disease processes at bay with Humira and Lodine. I do have far lesss frequent flares in my joints, spine and eyes. I see far less floaters, and as long as I use the color reverse buttons on my ZoomText application, I am able to write and use the internet far more effectively and less painfully. If I stay at it too long, I will have a headache, no matter how I turn the colors on screen. I expect I will find a way to do what needs doing. I just hope I can get others to go to a specialist early on. I am ok with myself and the way things have turned out for me. It is what it is, but I don't want this for anyone else, that is for certain sure.

Mary
Mike Bartolatz
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Re: Lynn, Welcome to the group!

Post by Mike Bartolatz »

I just found out Lynn is in Brentwood Tennesse not Oregon. so I recommended that she see DR Russel Read in Birmingham, Alabama or go to see Dr Foster in Cambridge, MA.

I know you only want to prevent blindness and that's why I respect you so much Mary. YOUR passion is what is needed at this site along with your 'story' which makes it easier for me to get people to realize how terrible uveitis can become if not aggressively treated using MODERN medicine as is your case today. it is really too bad that these drugs weren't used a few years ago as you Might have much better vision today.

(((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))))))
mike
Mike Bartolatz
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mtbargeman
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Re: Lynn, Welcome to the group!

Post by mtbargeman »

Mike-

My body started to go haywire in 2003. I had a small female cancer, which I was told was unrelated to HPV. I had a cryosurgery to remove the cancer from my cervix, then had to have another one a month later. Then I started my period and it never stopped. I eventually became anemic, I was in alot of pain, and it took eight or nine months before I could get a hysterectomy. I had no medical insurance, so I had to be a guinea pig for a bunch of students at a local hospital. It was very painful, and I was months healing from it. That was Sep. of 2004. Three months later, I developed Pars Planitis. I was 29. I didn't find you til 2006 (?). By then, my PP had spread to both eyes, I was visually impaired, and I ended up on SSD. That gave me Medicare. By the time I got disability, I was visually impaired from PP, I had joint issues, now labeled as Inflammatory arthritis, and not long after that, a bad mix of meds- Cyclosporine, Wellbutrin, and Tramadol, caused a spike in Blood Pressure that caused seizures. Now I take meds for seizures, and will for the rest of my life. I have Central Vestibular Dysfunction- childhood & early adulthood chronic middle ear infections caused me to have mastoid surgeries on both ears, I cannot wear traditional hearing aids. I finally had an infection that caused the vestibule- the part of my inner ear that connects to the brain& controls balance, quit working. It's like a dead wire. SO I have balance issues. I take Valium for that- it has the opposite effect on me- where it might make you dizzy, it keeps me straight. I also went through extensive retraining therapy to learn to keep my balance, not just once, but twice. I find that belly dancing was the best thing I ever did for myself there. I get FitTV on my sattelite, and they have a 30-minute show each day that teaches you basic belly dance. It has built muscle around my knees and hips, strengthened my stomach muscles, and helped to re-train my brain, without making my joints hurt too much like most of the other programs I tried. It has also helped with feelings of depression, especially during the cold times when I cannot go outside without my face hurting terribly. Vestibular migraines SUCK. So that's pretty much my story. It ain't pretty, but hopefully, people will look at it and just find a way to go to the doc. I was always telling myself I could not afford another bill to pay, so I put it off. Now look.

Find a way to get yourselves cared for, folks. I can honestly say, you won't regret it.

Mary
Mike Bartolatz
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Re: Lynn, Welcome to the group!

Post by Mike Bartolatz »

Mary,
I can't recall if they did DNA testing on your material removed from the ear. I wonder if one of the herpes viruses could have caused all of this. the epstein barr virus for example which causes encephalitis, can attack the ear, cause pars planitis and can cause arthritis and even transversemyelitis.

It still saddens me greatly that our medical system failed you.

I'll bet your husband enjoys watching you belly dancing :lol:

wishing you and your family the very best my friend,
Mike
Mike Bartolatz
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mtbargeman
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Re: Lynn, Welcome to the group!

Post by mtbargeman »

Mike-
He would enjoy it if I'd let him see me do it!! I send him outside. Yes, even in the winter. Since I don't know what I look like, I'm terribly self-conscious, especially since I've NEVER been able to dance. (Don't know how) He likes to tease, and he doesn't mean any harm, but I'd be crushed if he teased me about that...

They weren't doing DNA testing on anything that I know of in 1978or 1988,anywhere or in 2000at Military hospitals that I am aware of. They have put everything off so far on my being born three months premature in 1975, or to my ancestry, as we are ancestrally from the British Isles and we have American Indian blood, too- Cherokee and Blackfoot. Anything that can be found that they don't have to test for because medicare won't pay for it, it seems. Yay. I do not look forward to socialised medicine if it will be run anything like the joke that is Medicare.

Oh, well. I can still cut my own hair!Just cut it from below my waist to my collarbone with hair scissors and a set of Wahl clippers. Even AJ likes it- he says I did a good job. I'm not allowed to cut his hair, tho. Hmmm.

LAUGH!!

Mary
Mike Bartolatz
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Re: Lynn, Welcome to the group!

Post by Mike Bartolatz »

don't tell him it is 'belly dancing' but MODERN dance which allows for 'personal interpretation'.
I can't dance either. thought I could in my drinking days though - know better now. I used to be coordinated in movement but today I can't walk a straight line or walk down hallways without bumping into stuff, door jambs etc. I can't even bend over to tie a shoe without falling over.

there has to be some change to our medical system as too many people are dying or going blind etc from NO treatment at all because they don't have the money to get things taken care of. I remember trying to help you find aid in getting BAHA implants without any success a couple of years ago so that you might be able to hear and verbally communicate a bit better. the same goes for trying to get you help to find a cause of your uveitis suggesting tests to you to rule things out but the doctor just wouldn't do it.

I don't know about specific things that run in your part of American Indian heritage but as a general increased risk are:
Vogt Koyanagi Harada's which usuall starts at posterior uveitis and then it quiets, goes to the middle and then the front of the eye.
Sarcoidosis: gramulomatus uveitis with many body systems involved. can initially present as uveitis, tinnitus and arthritis of the hand which MAY develop into many organ system involvement such as lung, kidney, heart, CNS and skin involvement along with the ears, eyes etc, parotid gland, dry mouth and dry eyes.

Behcet's disease,
SLE.

Mike
Mike Bartolatz
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mtbargeman
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Re: Lynn, Welcome to the group!

Post by mtbargeman »

Mike-

I thought VKH was Japanese??? Well, goes to show how much I DON"T know. Anyhoo, I have a PCP who will actually listen to me now, so I am going to ask about some more tests. HLA-B27 was neg. Can you send a list of stuff I should have tested? I know thyroid runs in my family- my PGM and a P. aunt both had their thyroids removed.

I just spent an hour putting PayPal buttons back on my site- it would seem some jerk thought it funny to remove them. :twisted: Which would explain the lack of orders... SOmewhat...

Mary
Mike Bartolatz
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Re: Lynn, Welcome to the group!

Post by Mike Bartolatz »

not just Japaneese get VKH. it occurs frequently in individuals with Hispanic ancestry for example.
american indians of both north and south america are at risk of VKH because they imigrated from china and thus the genetics are there. Behcet's disease is also a possibility as is Systemic Lupus Erythematosus and Sarcoidosis
B51 is rarely found in behcet's patients in the USA or Canada. VKH starts in the posterior segment and then moves to the PP and then the anterior chamber. it can blind one quickly.
can occur as uveitis but this is rare. it mostly causes neovascularization of the retina and optic neuritis
sarcoidosis can appear as PP as Can MS. Sarcoidosis frequently takes out hearing. it progresses to posterior uveitis and neovascularization of the retina and can have optic neuritis as a component. dry eyes is frequent in SLE and Sarcoidosis.
MS can appear as PP and have CNS stuff as you know. it too causes neovascularization of the retina.
sjogren's syndrome can also appear in pp patients it too having optic neuritis as a component. it is most often related to severe dry eyes and dry mouth. Scleritis can be a compent of sarcoidosis, and SLE as well as rarely in Sjogren's syndrome.
pathogens such as LYME disease, catscratch disease, toxocara, whipples, epstein Barr, herpes sx and herpes zoster come to mind as well. MS is HLA DR15 and DR2. Sarcoidosis is pos ANA and ACE. SLE is SSA (anti RO52) and SSB (anti LA) anti SM and Neuromyelitis Optica IgG antibody if optic neuritis and transverse myelitis are present.
Sjogren's similar markers to SLE. all the viruses and pathogens can cause similar problems with hearing etc. VKH and SLE and sjogren's can also have hearing components and other organ involvment.

Hope this helps,
Mike
Mike Bartolatz
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mtbargeman
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Re: Lynn, Welcome to the group!

Post by mtbargeman »

Mike-

Sorry so long in replying. I've been in a pickle with the light issues for a few days. Much better today. Yes, those tests will be helpful. Will mention them to Dr.C. the 10th. Thanks, Mikey.
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