pars planitis and another autoimmune disease?

Post here with questions about other autoimmune diseases or conditions.

Moderators: Mike Bartolatz, kwork

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: pars planitis and another autoimmune disease?

Post by Mike Bartolatz » Wed Oct 21, 2009 7:33 am

I have no Idea why your opthalmologist has taken on attitude. he may have just been having a bad day.
He implied that MS like symptom of Uhthoff's sign is most often linked to pars planitis which is very true. along with other changes that could be from demylinating disease he wanted you to see a neurologist. the local neurologist didn't have much to say and that could be frustrating for the opthalmologist as well.
your attending physician will have to do referals.
maybe the MRI's will tell why this is happening.

wish you the very best,
mike
Mike Bartolatz
Moderator

Blondienbrunnette
Posts: 73
Joined: Fri Sep 25, 2009 12:20 pm

Re: pars planitis and another autoimmune disease?

Post by Blondienbrunnette » Wed Oct 21, 2009 7:41 am

Your right. thats what I mentioned to my husband last night. This is how it happened

Went to opthomlogist he did a referral to a neuro which the neuro said he couldnt see him until the internist did his exams and then the internist didnt want to make the referral at that time!!!!!!! Its one thing after another!! Oklahoma doctors...

He did have an attitude as soon as we walked in and he asked my husband who his PCP was..he threw his hand up..I knew I wasnt saying much because he would sit there and have an attitude towards me and I cant deal with that!!! But not tell us why he had a white out that is just ridiculous. Now we will never know..literally unless it happens again.

Hopefully the mri will show us the things we need in order to get to the right specialist. I have never seen alike the doctors we have ran into. Oh yeah, but the opthomologist told the front desk to let us know to get copies of his mri though!!!!! yeah, he wants to know whats wrong but doesnt want to help with the eye part. Sorry I am very frustrated at this point as you can imagine.

Just got to keep going to an oklahoma doctor nearby..my husband would never travel...:( unless it came to that point in where we didnt have a decision

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: pars planitis and another autoimmune disease?

Post by Mike Bartolatz » Wed Oct 21, 2009 7:45 am

if you want answers and MODERN treatment and DIAGNOSIS before something serious occurs, he will have to travel to a university medical school. that is just a fact of life.

sorry you have to take the brunt of this because your husband seems like he could care less. this is VERY SERIOUS STUFF, not things he can put off or shake off.

Take care,
Mike
Mike Bartolatz
Moderator

Blondienbrunnette
Posts: 73
Joined: Fri Sep 25, 2009 12:20 pm

Re: pars planitis and another autoimmune disease?

Post by Blondienbrunnette » Wed Oct 21, 2009 7:56 am

I think he definately knows a little more now. I try and tell him things spread out not in one day he would get over whelmed and stressed out more. But, I mean in reality he says the doctors don't care they are just in it for money. Here where we are anyways. So, he hates just going and handing them money when they don't want to help. But my mom mentioned the univeristy thing and I also said yeah, that you have mentioned that to. So maybe after getting his mri thats where we need to head to??? That might be a plan.

Because I told him just because we actually get into seeing a neuro doesnt mean he is going to care or even know what to diagnose you with. I think a neuro who specializes in ms would be good. Just because his family history and that connection between pars planitis and ms. Not to say its ms...but he has alot of risk factors for it.

Did you say you took a muscle relaxer? Come to find out my husbands dose is only 2 mg..I heard that was a small dose..no wonder they havent been helping!!

Also, we are young and I don't think doctors want to take us serious. They probably don't like when I speak for my husband. But this new doctor we are going to didnt seem to mind much. Which is good because I can explain things ALOt better then my husband can. He will just say...my legs are hurting. Well its not just leg pain its spascticity!!! big different there. ya know?

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: pars planitis and another autoimmune disease?

Post by Mike Bartolatz » Wed Oct 21, 2009 8:23 am

Start a journal listing how he feels on each day. go back and list approximate dates of when each symptom occured and what the opthalmologist said as an introduction to the journal. list test results as well. any time tests are done, ask for a copy to be made and given to you so that they will be available in the future for NEW doctors that might become involved can see. then if they order repeat tests, there will be baseline numbers to compare to.

I'll do some checking and will see if I can get contacts in Ok. for you. don't get your hope up as the best doctors I have already indicated to you. He will have to travel however to see any of them though.

is today the MRI?

Wish him the best,
mike
Mike Bartolatz
Moderator

Blondienbrunnette
Posts: 73
Joined: Fri Sep 25, 2009 12:20 pm

Re: pars planitis and another autoimmune disease?

Post by Blondienbrunnette » Wed Oct 21, 2009 8:42 am

tomorrow is his mri appointment at 10 in the morning. Hopefully the doctor will let us knopw those results faily quckly. But they are closed on fridays so I don't know if it will be next week or what. I think his aunt lives in kansas city so that will help. I will talk to him about that. If any good specialist would be in oklahoma near us would be oklahoma city.

Thanks so much mike!! I have calmed down some. I just shouldnt expect a lot of answers. Take it day by day and test by test.

Wondering if it was ON since he did have some vision loss in august he just didn't know. I thought I seen on his papers his vision was 20/100 in august. Now its back to normal I think. Which is good news its better now.

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: pars planitis and another autoimmune disease?

Post by Mike Bartolatz » Wed Oct 21, 2009 9:21 am

the white out and loss of use of his legs could be related to demyelination of nerves in the eyes and in the legs. this occurs when one overheats and the nerves 'short out'. it can last for less than a minute with optic neuritis or it can take a couple of weeks for the vision to return. when overheating of demyelinated nerves in the extremeties occurs, it usually last for days or longer. he overheated when his vision went out and he was outside on a ladder on a very hot day and that could have brought on the inability to walk.

vascular problems can also bring on temporary loss of vison as well. this might explain leg pain and cramping. this is why experts need to be involved with this as pars planitis is linked to both neurological disease and to vasculitis. his past history of epstein barr virus can also lead to neurological disease and to pars planitis. I have provided links to information for you in all regards to above topics in this ongoing thread. now the doctors have to get truly involved in diagnosis and treatment. the EBV has to be ruled out because if the cause it would require antiviral medications rather than oral steroids. ganacyclovir would be the antiviral most likely to treat pars planitis related to the EBV.

Wish you the very best,
Mike
Mike Bartolatz
Moderator

Blondienbrunnette
Posts: 73
Joined: Fri Sep 25, 2009 12:20 pm

Re: pars planitis and another autoimmune disease?

Post by Blondienbrunnette » Wed Oct 21, 2009 10:14 am

I have been reading on ms alot and talking to people on the webmd ms suport group. The pain he is having in his legs could be from spasticity which is a big symptom of ms. The leg muscle continously contract and can stiffen up causing the pain. The burning/aching is the day after it happens maybe from the muscle being stretched from the spasticity? I don't know if doctors know alotabout spasticity and ms. Maybe because most people with ms will present to their doctors with the tingling and numbness. But for my husband the numbness and weird things happen with his shoulders and one side of his body at the beginning of the year.

Maybe he has relapsed in August for the worser of symptoms?? I don't know thats my theory but I am no doctor..just read and research as much as I can ya know?

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: pars planitis and another autoimmune disease?

Post by Mike Bartolatz » Wed Oct 21, 2009 10:24 am

this is why I mentioned the neuromyelitis optica/transeverse myelitis which is also a demylinating disease sometimes seen in uveitis patients who also have optic neuritis. until tests and MRI's done allot of this is just hypothetical. only the doctors can answer the questions for your husband and initate treatment.
Most MS patients do not get pars planitis, MS occurs in about 6% of uveitis patients. some years ago a French study of MS patients looked at the pars plana (patients had no visual complaints) and found that as high as 16% of them had pars planitis. I think that the MS sites are unaware of the connection to uveitis and to pars planitis. several years ago I sent an email to the US MS society asking them to list uveitis in their medical dictionary and I think they did about a year later. many 'specialties' don't share information between them. often each specialty posts and reads in their respective Medical Journals but doesn't read in anyone elses specialty journals.

wish you the best,
Mike
Mike Bartolatz
Moderator

Blondienbrunnette
Posts: 73
Joined: Fri Sep 25, 2009 12:20 pm

Re: pars planitis and another autoimmune disease?

Post by Blondienbrunnette » Wed Oct 21, 2009 10:50 am

very very true mike!!! Thats where we ( my husband) is running into problems. With his pars planitis, although a small percentage, can be connected to autoimmune disease, ms being one of them, and his grandmother having a very progressive form of ms I think his risk factors are fairly high. But I'm no doctor just someone that researches and connects everything together as a whole. Instead of bits and pieces here and there.

General doctors have no clue what pars planitis is or even connected to at that. So of course they don't know his risk factors for auto immune diseases. Thats exactly how I feel about these doctors. They don't read up on the WHOLE part of diseases. Just their part in the symptom process. I think thats why the information you gave me and I printed of was very helpful in this new doctor to try and piece some of this together. But like you said, until he gets this mri done and it shows, or doesnt show we can only go from there...But, as soon as I hear the results of his mri I will defintaley let you know.

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: pars planitis and another autoimmune disease?

Post by Mike Bartolatz » Wed Oct 21, 2009 11:07 am

Those specialists at the Teaching hospitals are most likely to know what other specialists need to be involved. DR Rao for example at Washington University in St Louis would be able to refer to specialists there but it would mean travel. I don't know anything about the teaching hospitals there in Oklahoma so if you go there, it would be a crap shoot so to speak. whether or not the opthalmologists there would be able to implement treatment is unknown to me. contacting the Head of the Opthalmology department for consultation would be the best route to go rather than calling the department as the 'gatekeeper' who sets appointments could send you to someone without knowldedge of the symptoms and their relationship to various neurological or vascular diseases.

Wish you the best,
mike
Mike Bartolatz
Moderator

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: pars planitis and another autoimmune disease?

Post by Mike Bartolatz » Wed Oct 21, 2009 11:14 am

Sam S. Dahr, MD (Website)
3366 NW Expressway, Suite 670
Oklahoma City, Oklahoma 73112
Tel: (405) 713-4410 | Fax: (405) 713-4409

this doctor is listed at the Uveitis.org site. I know nothing about him but you could get a consultation with him and he might know of a Neuro opthalmologist. he might also have equipment to do specific tests on the eye to see if their is any demylinating disease present. if he has done a fellowship in uveitis that would be a good thing. those doctors on the list are supposed to be fellowship trained in Ocular Inflammatory Disease but it depends on where they did the fellowship as to their ability to employ chemotherapeutic drugs as some schools use a predominantly steroid treatment algorithm rather than a steroid sparing one.

wish you the best,
mike
Mike Bartolatz
Moderator

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: pars planitis and another autoimmune disease?

Post by Mike Bartolatz » Wed Oct 21, 2009 11:56 am

http://www.retinanews.com/

here is a link to the above doctor. he seems to understand that a corticosteroid sparing approach to treatment is required in many instances of uveitis.
a consultation with him might help get to specialists in Oklahoma City for any suspected related conditions.

mike
Mike Bartolatz
Moderator

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: pars planitis and another autoimmune disease?

Post by Mike Bartolatz » Wed Oct 21, 2009 12:29 pm

Dr Dahr sent me contact information for Neuro opthalmologists

mike
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Always happy to help in any way I can: below are two neuro-ophthalmologists I would recommend--Sam Dahr

Neuro-ophthalmologist I would recommend:
Gabriel Pardo MD 405-936-5648
see http://www.mercyok.net/physicians/detai ... ildingid=0


also:
Anil Patel MD at Dean McGee Eye institute 405-271-1091
see http://www.dmei.org/index.php?pID=675&subID=683
Mike Bartolatz
Moderator

Blondienbrunnette
Posts: 73
Joined: Fri Sep 25, 2009 12:20 pm

Re: pars planitis and another autoimmune disease?

Post by Blondienbrunnette » Wed Oct 21, 2009 3:00 pm

Mike wow thanks so much for your extra work!! I really do appreciate that. Dr.Dahr I think is the one I tried to call a couple of weeks ago when I didnt know what else to do. They need a referral from someone. Our insurance dos not insist on a referral but since our insurance is located in a different town then OKC then they need a referral to get into him. That is what his office told me 2 weeks ago!?!

I will see how the mri goes tomorrow and see what those results are. Maybe we ca get somewhere with those results. I jsut got a call from the hospt awhile ago telling me about the money part. Was letting you know in case someone else asks how much they cost. $4700! We have to write a $400 check tomorrow and still be reliable for maybe $900. He still owe on his ct scans that another pcp ordered of his abdomen and pelvic area?!?! which is $3700. Also, he had a ct scan of his spine at another er visit...which I don't know how much that is going to cost...wooo getting a little overwhelmed but it will work out in the end.

Again mike, I really do appreciate ALL your help and responding back to me rather quickly. I will look at those referrals you got for us.

Post Reply