pars planitis and another autoimmune disease?

[Blondienbrunnette]

Hello there. I am new to this website. I am here for my 24 year old husband. He was diagnosed with macular edema and pars planitis at age 18. He had 2 shots and oral steriods. He now has a cataract in his troubled eye. He had an mri done at this time to check for lesions for multiple sclerosis because his parents were concerned due to the fact his grandmother had multiple sclerosis very progressively. Those came back normal.

He has not had any significant symptoms until this year that indicated any other problems. It started with leg/muscle pain and fatigue. He went to the doctor and they diagnosed him with a kidney infection because his urinaylsis came back that he had an infection grant it no symptoms of a kidney infection. He went on to have alot more problems. headaches,knee pain in both knees,fatigue,cloudy vision for a minute or two in his bad eye. He got alot worse from there. Also one day in the heat I think this was august we were outside painting and his legs were shaky because they were weak. the rest of the evening they were pretty weak. At one point he walked to the bathrooms on his knees.

After taking the antibiotic for his kidney infection he had low back pain and nausea. So I brought him to the er thinking it was still a kidney infection. The er doctor did a urinaylsis and concluded that there were some blood in his urine but not enough to call it an infection. He stated that it could be reiters syndrome.

From then on his back pain got SEVERE. He vomitted the first day of the pain. Then went on to say his pain felt like muscle spasms and electrical shock sensation in his back and later on the week starting jerking. He had back weakness from all the muscle spasms. His back pain was so severe he had to take off of work for 7 days. All he could do is lie in bed it hurt so bad. I ended up taking him to 2-3 different doctors one including an internal medicine doctor and 2 er visits. Noone could figure out what was wrong with him. His internal medicine doctor did diagnose him with having prostatitis also for some urinary symptoms he was having, including, impotence and urinary hesistance.

I also took him back to see his opthomologist because of the cloudy vision. He did some blood work to check for the hla-b27 marker. That came back negative. He goes back to see him Oct. 20th.

He got better after taking anti inflammtorys and muscle relaxer and an antibiotic for the prostatitis. The past couple of weeks he has had more symptoms. Tea colored urine,foamy urine,leg/muscle pain,knee pain in both knees and a couple of migraine headaches.

If you have any suggestions on what this might be I would greatly apperciate it! We are pretty desperate for answers at this point. Sorry the message was so long and I hope I posted it in the right place.

[Mike Bartolatz]

First of all I am not a doctor but I do have a history of Pars planitis. I moderate the Pars Planitis forum, http://www.parsplanitis.org for DR Foster's Ocular Immunology and Uveitis Foundation's online support group.
that said, get tested for the following markers in the blood:
HLA DR2 and HLA DR15 markers sometimes seen in MS which can take a decade or more to show lesions on the Brain related to Pars planitis.
you said he lost function of his legs when he Over heated. this sounds like it might be Uthoff's sign. it can also impact vision. I have this and My vision has gone white out from it several times in my life.
your husband should have a spinal tap and MRI of the spine to look for transeverse myelitis and spinal MS.
if he has a history of optic neuritis, he could be tested for a serum marker known as 'anti neurolmyelitis optica IgG antibody' this is also realted to the transversemyelitis/spinal MS.
if positive for the above marker, and if he has positive Anti Nuclear Antibodies in his serum, then test for Systemic Lupus erythematosus and Sjogren's syndrome could be done. these things can also impact Kidney function and specific tests can be performed. for SLE and Sjogren's, ANTI RO 52 (SSA) (also linked to transverse myelitis) and ANTI LA (SSB), ANT SM and other clotting factors etc.
I do know several individuals who have been members of the PP forum and this site who had Pars planitis and lupus or Sjogren's syndrome.
there is information in the RELATED CONDITIONS forum and the Medical informatioin section regarding all of this.

I also moderate the Learning about Ocular Inflammatory Disease Forum for DR Foster at http://www.uosg.org the online support group for the foundation.

Please ask any additional questions you may have and I will do my best to get you answers.

Wishing you and your husband the very best,
Mike Bartolatz

[Mike Bartolatz]

If he does have ANKYLOSING SPONDYLITIS, PSORIATIC ARTHRITIS, type changes to the spine causing arthritis, there are additional genes that can be tested for: the IL23R and ARTS1 genes are linked to several autoimmune diseases: ANKYLOSING SPONDYLITIS, PSORIATIC ARTHRITIS, CROHN'S DISEASE, Autoimmune thyroid disease, Breast Cancer, MULTIPLE SCLEROSIS, SYSTEMIC LUPUS ERYTHEMATOSUS,
the conditions in CAPS have been seen in Pars Planitis patients.
Additionally, LYME disease can cause similar distress resembling both MS and Arthitis and which can cause PP and other forms of uveitis.

i hope this helps,
Mike

[Blondienbrunnette]

I hope I posted this in the right section. Still trying to learn to navigate the sight. I did not know you were correlated with Dr. Foster. I posted the same question on his site also. He said one would have to suspect Reiter's Syndrome. Even though he tested negetive for the hla-b27 marker.

I cannot get any doctor to do an mri. They all look at me like I'm crazy when I ask. Also they ask me what I would want the mri of and reply "The brain and the spine." They reassure me If I could get one done I would ONLY need the brain. I have heard from some people with multiple sclerosis that at the time of their mri they only had lesions on their spine mri.

I'm really not for sure at this time what it could be. but I have also thought about lupus also. I have read that most of the patients of lupus are women. But his symptoms also can fit lupus also. His internal medicine doctor did do some blood work for sed rates and those came back fine but he was taking anti inflammatorys over a week or 2 when he had that blood test done. Alot of his doctors has told me that multiple sclorosis does not usually present like this. His legs ache everyday or both of his knee hurts daily. I just don't understand what it could be. I am no doctor or expert but I have a feeling it is connected somehow with his pars planitis. I am exhausted on trying to get him diagnosed it does get frustrating sometimes. But, I'm trying to keep with it so we know what we will be dealing with. I don't know if this has ANYTHING to do with PP or his new symptoms but he did have mono at age 17 when he was in high school. I remember this because I always tease him. We were dating and I asked him who he kissed because I never had it. lol

I don't want anything to be wrong but there is definately something not right and I just want someone to figure it out so he can try and get better with whatever medication he needs.

Thanks so much for taking the time out and replying!! I really do appreciate all the information you gave me.

[Mike Bartolatz]

many viruses trigger autoimmune diseases, the epstein Barr virus that causes MONO is thought to trigger Chronic fatigue and fibromyalgia. it can rarely cause uveitis and is very difficult to treat.
if he has neurological stuff going on, a trial of neurontin might help with the leg pain he has. if it doesn't work, then it would indicate another cause. has he had MRI or xray of the lower lumbar region of the back and pelvis to look for ankylosing spondylitis?
the most common associations between pars planitis and autoimmune diseases are Sarcoidosis, MS, Behcet's disease and then pathogens for Lyme disease, Catscratch disease and toxoplasmosis and toxocariasis.
there have been cases of Crohn's disease, Systemic Lupus Erythematosus and sjogren's syndrome reported in the literature.
if one develops vascularization of the retina then SLE and MS as well as LYME disease would be suspect as the most likely causes. the chance of behcet's disease is pretty small. PP is a very rare form of uveitis occuring in about 2% of cases. one man in his 60's developed PP and lupus and was reported in the literature. MS does occur in Men with pars planitis perhaps at a higher rate than the general population.
where are you located? have I suggested an Ocular Immunologist for your husband to see who might be able to sort this stuff out?
you can post to any forum with questions.
there is allot of frustration for those with this stuff as well as those helping them get care. thats why this support group and the others I've mentioned are here to help. doctors rarely know what to do with us and they most often defer to other doctors to run tests because they know little or nothing about all of this who in turn know nothing but won't admit it.

I've given you the genes and some other markers to get tests for, the SSA and SSB markers need to be repeated annually because they can take years to show up in the blood. I know people who have first presented with symptoms of SLE and Sjogren's syndrome who have taken decades to get the markers.

Wish your husband some relief.
Mike

PS: I take neurontin for the leg pain you mentioned that your husband has. it helps with generalized achiness for me. I have fibromyalgia. msb

[Blondienbrunnette]

He had a ct scan of his abdomen,pelvic area and his spine. All came back fine except some degeneration of his spine. He was given anti inflammatorys,muscle relaxers and oxycodone. He does NOT like to take pain meds they make him feel gross. So I told him to atleast keep taking the anti inflammatorys and if he needed the muscle relaxers. His knees and/or legs hurt daily now. I will definately mention the genes and meds you have told me about to his new doctor. He goes to see a general doctor Oct. 5th and he goes back to see his opthomologist on Oct. 20th. We are located in Oklahoma. His opthomologist is Dr. Balyeat. He is really nice we both like him.

So if this is all connected to his eye disease who will help him out the most in his diagnosis? Maybe noone can find what's wrong with him because we are not seeing the right doctors/specialist. I figured his next appointment with his opthomologist would go pretty well. But, I never knew about eye specialist who specialized in uveitis. That is something to look into. Are we just wasting our time with the general doctor? But, I thought most specialist needs a referral to get into.

He has had some concentration issues. Not too bad though. I did not know if it was a symptom or due to the fact he was fatigue or scared not knowing what was going on with his body. He has not had any concentration issues the last couple of weeks. For example, I asked him to go outside and water my flowers..He walked outside 2-3 times and came back in..Then, he asked if I would go outside and help him water the flowers. Usually he is a pretty well concentrated person. Never needing my help. He is a type of person that catches on pretty quick. So for him to be like that was kinda odd. Also, another example we were sitting at the table having lunch on day and all of a sudden he got very agitated!!! Noone said or did ANYTHING to make him mad.

He is still having some tea colored urine also. He has not had any foamy urine recently. But, 2 weeks ago when he had some foam in his urine it was pretty bad.

Thanks so much for your speedy replies. I really appreciate you. Thanks for all the information also. I will definately be reading..

[Blondienbrunnette]

Also I ment to ask you another question about reiter's syndrome. I'm kind of confused. It can happen after a stomach bug or an infection of the genitals. Would a kidney infection be classified of a genital infection? That's where I'm confsued I keep crossing the words of sexual transmitted disease. Does that many any bacteria that can cause an infection or like chlymdia? Because I know for a fact him nor me have an std. We have been together since I was 15 and he was 17. He was my first and I was his first.

Sorry if this is too much information. I was just really confused on that part.

[Mike Bartolatz]

although reactive arthritis is also called 'reiter's syndrome' it doesn't necessarily require sexual contact although STD's can cause it to occur and is the most common cause. it is linked to the HLA B27 gene that also causes ankylosing spondylitis, psoriatic arthritis, crohn's disease and ulcerative colitis. additional genes, IL23R, ARTS1 and IL1R can also be linked to them. all can have various forms of arthritis attached to them. most also cause arthritis of the pelvis and spine and some cause arthritis of the shoulders and knees as well. arthritis of the hands and feet occurs with psoriatic arthritis but it too can attack the spine and pelvis. usually with reiter's syndrome there is inflammation of the achilles tendon's as well along with balanitis, a pustular effect on the penis and legs in men. mouth sores also occur eith Reiter's syndrome.
I would think that ankylosing spondylitis would be more likely as Reiter's is almost non existant anymore. things that cause GI distress through ingestion are the primary triggers and occasionally reactive arthritis is gotten through an infection of a joint through a cut or puncture wound.
I don't know what the Cause of your husbands kidney problem is. like women other fungal causes can occur to cause kidney infection. inflammation is another thing all together with kidney stuff and that could be related to things like lupus for example.
some of the things that can trigger HLA B27 related things are Salmonella, Ecoli.
T whippeli for example with severe GI distress as the preceeding factor to trigger the various things. sometimes sinus infections and gum disease can trigger it too.
they don't cause pars planitis however.
Toxocariasis which is a roundworm can cause Pars planitis. it is passed through animal waste with the most common sources being dogs, cats and domestic animals who have gotten it from eating grass contaminated with the pathogen.
it has been the trigger for PP in inner city kids who have played on playgrounds on which animals have deficated and then the kids get it on their hands and injest it accidentally. this has occured here in the USA as well as in Europe.
you can drive yourself silly trying to figure out what caused the Pars planitis. in about 60% of people who get Pars planits, there is never a cause determined. some do feel that PP may be related to vascular disease as some of the autoimmune diseases associated with PP have vascular disease present.
you might ask that the HLA DR2 and HLA DR15 genes be checked for related to MS.
the HLA B51 gene is sometimes seen in Behcet's disease but the ancestry of the person would most often have an asian or middle eastern component.

Rarely Tuberculosis is a cause as well. Exposure to mycobacteria Tuberculosis while traveling to endemic parts of the wold might make this a possibility.


Wish you the best,
Mike

[Blondienbrunnette]

I had another question for you..My husband does have pars planitis and a cataract in his left eye. Well last month before his back pain started he he had gotten ready to go to work and bent down to kiss me bye and all of sudden put his hand over his eye and I asked him what was wrong. He is the type of person that doesnt like to complain so he said nothing.

Later on that day I asked him what happened. He said his eye sight went completely white in that eye. I'm still confused if he had any pain or not. He does not explain himself very good sometimes.

My question is..Could the white/cloudy vision be from his pars planitis and cataract? Or do you think it could have been another underlying problem? I have been trying to read on optic neuritis but it seems like his eye sight would have been pretty bad for awhile. This only occured for a couple of minutes. Like I said, it was in his bad eye..so he can hardly see out of it anyway. But it went completely white. I don't know if he means blurry,cloudy or blind.

Thanks in advanced!

[Mike Bartolatz]

A situation like this needs to be evaluated right away by the opthalmologist. this is NOT NORMAL. something underlying has to be causing it as it is not the 'pars planitis' but something else. tests need to be done to see why this is occuring. neurological evaluation should be done as well as vascular evaluation. how old is your husband? at what age did he develop pars planitis. PP is normally a condition of adolescents and individuals in their twenties. when it develops in someone 'older' it should be evaluated for either a pathogen or a masquerade syndrome. you mentioned degenerative changes in the lower lumbar region of the spine. this is normally from wear and tear, not related to the forms of arthritis seen in uveitis. it most often starts with a bulging disc and then the vertebrae rub against one another causing damage to the facets and then the body starts building new bone causing arthritis or bone spurs on the spine which impinge on the nerves exiting between the vertebrae.
rarely the gene HLA A28 is related to knee arthritis and uveitis which you have said your husband has.
the only thing I can think of that would cause a 'white out' to occur when light isn't behind the object being looked at is demylination of the optic nerve. the white out occurs when one is overheated.
flare, protein build up in the vitreous from inflammation called vitritis can cause a white out effect which occurs when one looks into bright light. like looking out a window from inside. sunglasses help this especially tight fitting wrap around polarized ones.

please get him in for various tests. a university setting is the best place to get them done as other specialties are available there for consultation.

wish your husband the best,
mike

[Blondienbrunnette]

My husband is 24. He was diagnosed with pars planitis and macular edema at age 18. The white out occured for a few minutes he says. But as soon as it happened he had to leave for work. so I'm not sure. Like I said he is not the best at describing symptoms. So I'm not for sure if he had pain with the white out.

I have asked over and over and over for an mri to be done. Every single doctor has turned us down. One told me he had enough imaging down with the ct scans and if something was wrong it would have shown it.

A week after that happened I brought him to a local optomotrist and he referred him back to the opthomologist he seen in Novemeber. The opthomologist said his pars planitis was inactive and his eye pressure was normal. That's why I didn't understand the white out. His opthomologist did not say much about the white that I can remember. He was busy trying to write down all the other symptoms he was having. My husbands back pain was so bad he about not made it to the appointment.

His legs has been hurting everyday for the past 2 weeks. He said it's a burning/aching pain. He goes to see a regular doctor on monday and does not go back to his opthomoligist until Oct.20. I am ready for answers. He is in pain everyday.

[Mike Bartolatz]

could your husband be a diabetic? I am type II diabetic (not overweight but it runs in my family in skinny people) and the pain you mention sounds like neurological pain. mine is treated with Neurontin (gabapentin).
other neurological disease can be seen in pars planitis patients with Optic neuritis as a component. I mentioned a blood test called NMO IgG antibody test to look for optic neuritis and transeverse myelitis (NMO stands for Neuromyelitis optica)
your GP could order this test. to me it sounds like your husband needs a Ocular Immunologist NOW to become involved in his care who can order proper tests NOW to get this under control. spinal tap may also be needed to look for things in the spinal fluid as well as imaging to look for blockage of the spinal canal (transverse myelitis).
Has LYME disease been ruled out as it can mimic MS and cause pars planitis?

where do you live so that I can try to hook you up with a REAL specialist in the diagnosis and treatment of Pars planitis and underlying autoimmune conditions and pathogens that can cause this. you may have to travel as there are only about 100 or so in the entire World.

Wish you the best,
mike

[Blondienbrunnette]

Actually I called one the other day since you suggested that. He is about 3-4 hours away. The secretary said she would need a referral. So I guess it will be oct 20th until we see his opthomologist again. If I could even get him to travel that far. Like I said before, he does not like to make it a big deal going to the doctor. Even though he is in pain daily. Lyme disease I'm not sure if they have done blood work or not. He has been to several different doctors. I have asked him though if he ever remembered being bit by a tick and having a rash and he said no.

I do know his parents have thyroid problems. His dad also has had some issues with bells palsy,acid reflux and I am not for sure what else. He does not like to talk about his medical conditions though. His lymph nodes get swollen alot in his chest bgets hard for him to swollow. Also, I remember him saying he was at work ( he owns a chicken restaurunt in town) he had a whole pan of mashed potatoes and drop them for no reason. I have asked my mother in law if he has any specific tests done besides thyroid problems and she said no. Sometimes its helpful to know what your parents have to see if your at risk for it. They may have nothing to do with my husbands current condition just thought I would throw that out there.

[Blondienbrunnette]

I forgot to mention also he did blood work for thyroid problems all those came back fine. Also the other day his legs and knees hurt so bad they just about gave out on him. Also this week or last week his legs got weak again on him.

[Mike Bartolatz]

he can get a referra to a specialst through his General Practice doctor, he doesn't need the opthalmologist involved. he needs someone 'driving the bus', not just you trying to figure this out. the GP can order tests, refer to other specialists etc.
he needs additional tests on his eyes like evoked potentials to see if there is neurolgical stuff going on that your local opthalmologist may not be able to perform. OTC scan of his retina to monitor the Cystoid Macular Edema as well and perhaps Fluoroscein Angiogram and visual fields test to see if there is peripheral vision loss. CME is normally associated with long term inflammation and can cause blind spots as well as detached retina and can lead to the development of membranes growing over his retina called epiretinal membranes which distort vision etc. sometimes new blood vessels start growing in the retina as well which can bleed. He needs more than just the local opthalmologist now. all of this seems to be over the skills of the local opthalmologist who seems unwilling to refer or do tests related to pars planitis.

mike