It's Official..

[Flug]

Well after a few months of waiting and various tests which included a positive lumbar puncture the Dr. said that I have MS.

So now I have Ankylosing Spondylitis(AS) and MS. And both my RA Dr. and Nero both have never had a patient that has or had both . I am unable to take TNF blockers to treat my AS because it can cause me issues with MS. So not sure what kind of treatment there are for both .

[Lexie]

I'm no help at all, just wanted you to know I was praying for you! The people on these boards are the most caring and helpful people I have ever seen. Someone will have an answer. Hang in there!!!

[cloudedmoon]

Sorry to here all that. I had to look up AS. MS and AS are both autoimmune diseases. I hope they can come up with something to help you. Keep us abreast of what is going on and what they come up with. (((hugs)))

[Flug]

Thanks for the hug and prayers its much appreciated

[Redwings]

Hi Flug:
In Southern California, there are several large neurology centers (such as at university medical centers like USC, UCLA and UCSD) where, as referral centers, the neurologists do have experience with patients having both MS and a rheumatological condition like RA or AS and are used to conferring with rheumatologists. There's no reason for your rheumatologist and neurologist to try to guess their way through you treatment alone when there are so many other experienced doctors for them to consult with.

If you have a PPO, and one of those large centers takes your medical insurance, it might be a good idea for you to consult with a neurologist there who has experience with cases like yours. If not, the fact that neither your neurologist or rheumatologist has experience with other patients with a history like yours should be enough for you to ask those doctors to -- or for you to, on your own -- petition your medical insurer for an out-of-network exam by a qualified neurologist.

In a way, I've been in your position. None of the local neurologists in my HMO were qualified to diagnose or treat what appeared at the time to be an atypical case of MS. I got an outside consult at USC, where I was diagnosed with neuromyelitis optica. So, if I were in your position, I would NOT be satisfied to let doctors with no experience with my situation treat me without at least consulting with more qualified doctors.

Methotrexate and Rituxan are options for you, as are other medications. It will take an experienced neurologist, consulting with an experienced rheumatologist, to determine what the most appropriate management program for you is.

[Flug]

Redwings thanks so much for that thought. It didn't even really cross my mind that I could do something like that . I will look into that. Both Dr.s want me to start embrel, I looked into and found that people with MS should not take it. So yeah I do need to find the right Dr.(s) to get this figured out. Thanks again. I will update my progress or sometimes lack of progress as time goes on

[artgirl]

Hello Flug,
First let me say I'm sorry you are going through such a rough time but there is hope. I am just like you an "atypical" patient. I was dx with rheumatoid arthritis in 2001 and went through mexotrexate and up to Remicade Humira all of it until 2004 and my first "episode" hit of nystagmus. Long story short seeing a neuro opth, neuro and my rheumatologist I was told "no more biologics". They suspected MS at the time. I am fortunate to go to Washington University Center for Advanced Medicine here in St. Louis, MO.

With the help of my RA doc two years ago they decided to put me on Rituxan. It was the best decision I ever made. I have to say I was a bit scard at first but they even printed out studies for me to read on how it not only works on MS but RA as well. Am I ever glad they did. This year was awful I began with episodes of trigeminal neuralgia and then optic neuritis this past summer.

They still have not dx MS because they are looking at NMO but the Rituxan has given me my life back for now. If you do some more in depth research you will find the Embrel is not to be used on MS patients. My RA doc works very close with my neuro in the same building and she does have one other patient like me she said.

Please find a good team of a neuro , rheumy and PCP that will work and talk to each other. They do exist.

[mjan]

First of all, I am sorry you have both diseases, but its workable. I would ask the Rheumy to ask his colleagues to find out who else has had a patient with both. Rhuemies are amazing in what they know about autoimmune diseases.

I know exercise (swimming esp) is important for BOTH illnesses.

Keep us informed as to how you're doing and who IS helping you.

Best to you, Jan

[Redwings]

Rhuemies are amazing in what they know about autoimmune diseases.

That might be true. (My rheumatologist is fantastic(!) and saved my life when no one else would take my case). But any rheumatologist who would recommend Enbrel for an MS patient when the American Academy of Rheumatology (and research) advises against TNF inhibitors for people with demyelinating diseases doesn't fit that caytgory.

[Redwings]

That's "category." Proofread, dammit!

[mjan]

That's "category." Proofread, dammit!

Oh gee Redwings.. here I thought your typo made you just like us/me...LOL It made me smile. I am not quick ...well..only on the backspace LOL

Best to you (know that I am only kiddin you~a sign of affection).

Jan

[Flug]

Thanks everyone that replied

I actually got to visit my RA Doc yesterday and I guess there was some sort of confusion from the Nero. Anyway he suggested the same thing that Redwings said and that was to go to a MS center , he suggested going to UCLA. So I am going through the process (yes there is one ) of making an appoinment. He said it could be months out. So now its more waiting games.

[Lexie]

Thoughts and prayers for you. Hang in there and these boards are the most stress relief I have found. Let us know how you are!

[golfwidow]

Dear Flug,
Glad you found this site. Redwings is a wealth of knowledge.....be patient with the medication process and the process of seeing the specialist.........it is worth the extra time to get it right !!!!
Hang in there----saying a prayer for you and your situation.