New from Calgary, Canada

[Jeff vinc]

Hi everyone, I was diagnosed back in January 2010. My first symptoms was double vision, hearing loss on left ear, strong headaches and sharp pain behind left eye. I did a bunch of MRI and blood works. I was on Prednisone for 2 weeks and everything was back to normal. May 2010, same thing again without double vision ( hearing loss and strong headaches and sharp pain behind my left eye). Prednisone for 2 weeks again and back to normal. Now we are in December and it is coming back again. Hearing loss, headaches ( Advil doesn't work), pain behind left eye, very tired every morning, my left eye is pushed of the orbit a little bit but no double vision. The neurologist said in May that if it is coming back again he will do a lumbar puncture (spinal tap) and i will stop the prednisone because it is too toxic, he said i will take something less toxic but everyday for the rest of my life ( don't know what). In general i am in really good physical condition in exception of the symptoms i mentionned and seems like it is worst in the morning and the evening.
Anyway, i am happy to see that there is a forum and discussions about this disease and makes me feel better just to know that i can share discussions with people who have the same disease than me.

[Jack]

Hi and welcome to the forum. :)

Your symptoms as described don't sound very typical of Wegener's, how was your case confirmed? Have you had positive biopsies?
If it is indeed Wegener's then it is not surprising that it is coming back if you are only taking Steroids and nothing more effective. Steroids alone will not normally bring the disease into remission and leaving it uncontrolled can lead to serious trouble. If the intention is to also stop the steroids, I would be seriously concerned.

[JanW]

Jack's question is mine, also, Jeff. How precisely was your case diagnosed?

[elephant]

Hi Jeff, need to see a Wegeners specialist and have a CT scan of the orbitals done and have the wegeners specialist look at it. This eye pain can mean many things, sinus pressure and the pain radiates in the eye or actually have WG in the eye...ect
I think they started you only on prednisone because of your symptoms...thinking your WG have not gone to any vital organ and it sounds like you have no sinus involvement.
I too wonder how the Rheumatologist confirmed your WG.

[Sangye]

Hi Jeff, welcome to the group. Your symptoms could be due to Wegs. I also wonder how it was diagnosed. What did the MRI show? Have they done a head CT also? You need to know exactly what's going on with your eye. Your description sounds like a granuloma behind the eye that is causing headaches, double vision and proptosis (eye bulging out of the socket). This is quite serious and can result in permanent loss of vision as well as damage to other parts of your brain. They must be diligent about looking for Wegs involvement behind the eye.

Spinal taps are not a part of Wegs diagnosis. The condition I think he's talking about is pseudotumor cerebri (elevated intracranial pressure). That can cause some of your symptoms, and a spinal tap is done to rule out other causes. (PTC is not related to Wegs, though. You could have it along with Wegs, as I do.)

As the others have said, you cannot treat Wegs only with prednisone, and certainly not this type of involvement. There is no Wegs drug that is automatically used for the rest of your life. To be honest, I think your neurologist is terribly uninformed.

[Jeff vinc]

Hi,

Thank you very much for all your comments. I had CT scans of my head. When i saw the neurologist the first time, it was after my CT scan. His first tought was the Tolosa Hunt syndrome, but after my blood test, i was diagnosed positive at the ANCA test and this is the reason why he said i have the wegener. i never had biopsies and he said from what i remember that i am not gonna have any. The reason of the spinal tap it's because he said he want to make sure that there is not anything else. The MRI shows a little mass behind my left eye. Everything is so confused in my head now because i've seen a rheumatologist who apparently knows a lot about wegener disease but all the info i had about my conditions were from the neurologist. When i talked to the neurologist the last time he said he saw a few cases of wegener but he told me that i was a mild case. Anyway, i will contact him tomorrow and with all your comments i will have a LOT of questions for him. Thanks so much for turning the light on.I will stop posting here until i have a confirmation so i wont bother anybody with my lack of knowledge about my situation.
Thank you!

[Jack]

There is no reason to stop posting Jeff. The more questions you ask, the more knowledgeable you will become and this is a vital part of managing your treatment and your choice of specialist. One thing I would add following your post - ANCA results used to be though of as a good indicator of Wegener's, but is now only used as additional information due to the number of false results it can give. The "Gold" standard is a +ve biopsy result, but usually diagnosis is based upon a whole range of symptoms and results which together give a good probability that the diagnosis is correct. It is always dangerous to label any particular case as "mild" because the nature of the disease is that it can change very quickly and is not restricted to any one area.

[elephant]

Jeff really please post and ask questions. We are here to help and guide you, we are a rare breed (WG). Keep us update.

[JanW]

Same here, Jeff. WG should never be diagnosed on the basis of a positive ANCA alone. It's that, when used in combination with some 'classic' symptoms, allows for diagnosis without a positive biopsy (for instance, I had a biopsy, but it was inconclusive; I've known of others with only one symptom -- in this case excessive nosebleeding -- where the biopsy was positive and the person has never had a positive ANCA over 15 years.

Obviously, you will continue with what you are doing because you need the neuro to rule out any other possible maladies. But I think that to a one, none of us would say that a neuro should be either diagnosing, or treating WG.

[Sangye]

The MRI shows a little mass behind my left eye.
That's what Wegs involvement there would look like. It could be other things, but with a (+) ANCA and your symptoms, Wegs is at the top of the list.


When i talked to the neurologist the last time he said he saw a few cases of wegener but he told me that i was a mild case.You may have mild involvement at the moment, but like Jack said that can change quickly if it's Wegs.


Thanks so much for turning the light on.I will stop posting here until i have a confirmation so i wont bother anybody with my lack of knowledge about my situation.
Thank you!No need to stop. Ask anything you want! We all came into this knowing nothing about Wegs.

[marta]

Hey Jeff,

I'm from Jasper, and a couple of months ago I did an intensive search through the Alberta College of Physicians and Surgeons for doctors in Alberta specializing in vasculitis - I too am looking for a someone who specializes in vasculitis in Alberta. I cross referenced it with what patients think about them and I found someone totally noteworthy in Calgary. I haven't seen him, but he was first on my list for getting a referal to, his name is Dr. Steven Edworthy and he's a rheumatologist in Calgary. Just a thought. Not sure who you're seeing, or even if he's good, but I got a good gut feeling about him and who knows, he might be awesome. That's what his patients seem to think on the rate a doc site.

Take care of yourself, ask questions, and if it is indeed Wegener's you gotta be on top of it, and be your own best advocate. I too was in super shape before this thing wholloped me and it's a hard pill to swallow - pardon the pun, but if you're on top of it I think things can happen and turn in a good direction. I'm holding my breath.

[Jeff vinc]

Hi Marta,

Thank you for all your info and your support! I've been able to book an appointment with my rheumatologist and he is specialized in vasculitis and he knows a lot about wegener apparently. He is very good from what i heard. I've seen him once before but for a short period of time. If you want i can give you his info. His name is Dr Liam Martin and he is located in Calgary. Just let me know if you want his phone number i will give to you. I will see him next week and i also have my appointment on December 20th with my neurologist. I am going for blood test tomorrow morning. I will post again when i will have some results. Who know it might help. :)
Thanks to all for your support, it is really nice and surprising to see this.
Peoples in general doesn't know anything about this disease so it nice to be able to share discussions with persons in same situations.

[pberggren1]

Welcome Jeff, you will find this Forum the next best thing to your source for Wegs info besides your doc, that is if you have a Wegs specialist. I am in Swift Current, SK and actually have a Wegs specialist here. He is most likely the only Wegs specialist in Western Canada.