I might have Wegeners or not...

[kcabrera3]

Hi Every one, my name is Karina, I live in London where is spring finally!

I have been writing this over and over because I cannot understand why my Doc think I might have Wegeners but I would appreciate if someone have a similar experience than mine and can share it with me so I can have some perspective.

In Jun/Jul last year I started having problems with my left eye after an incident in the garden with dirty water. I had a mild infection, I took cream, drops and antibiotic pills but my eye did not get better. the GP thought I might have an allergic reaction (In one eye) The list of drops and theories was long and scary (at some point I though that I was losing it). This happen at the same time with other issues like a cough and a lung infection. I took again antibiotics and antihistamine, the infection and the cough went a way but the eye grow increasingly bad.

I started to have pain next to the eye (like muscular pain). it took me three ophthalmologist (I am not taking into consideration the number of time I went to the emergency and the GP) to find that I had a blockage in the tear duct but in the scam the shape the sac has was funny so they thought I might have a tumor. I was lucky that I did not have a tumor, but I had a mass so they did a biopsy that came inconclusive but the clean the tear duct and put a tube.

Now, I have a very nice, clean an wonderful eye but I still have pain under the eye and I think I have the same pain in the other eye... but not as strong.

So the Ophthalmologist refer me to a ENT (just to keep my sinus under control) and the rheumatologist...

I have a few options. One is wait and see. The second is to go to a regular rheumatologist and the third is going to the ENT because I always has running nose and see what she thinks...

with your expirience, my story resonate as Wegeners or not and what will you do?

Thanks for the help.

[Pete]

Hi Karina,

I suggest you see the rheumatologist and raise the possibility that you might have Wegener’s/GPA and see what the reaction is. Rheumatologists work more frequently with autoimmune diseases and may have some experience diagnosing and treating them. If the local rheumy seems to be stymied about what you have, perhaps a referral to Dr David Jayne at Addenbrooke’s Hospital in Cambridge would be appropriate.

Good luck!! I hope you get some more definitive answers soon.

[drz]

One of my first symptoms months before I finally got diagnosed with Wegener's granulomatosis was scleritis in one eye. Wegs is usually under diagnosed so if a competent doctor suspects it I would take it very seriously and pursue clarification ASAP since it can rapidly change from mild symptoms and smoldering along to a big flare that causes a lot of body damage, especially to kidneys, and even death from delayed treatment. Good luck.

[NatriceRomeo]

Hi Every one, my name is Karina, I live in London where is spring finally!

I have been writing this over and over because I cannot understand why my Doc think I might have Wegeners but I would appreciate if someone have a similar experience than mine and can share it with me so I can have some perspective.

In Jun/Jul last year I started having problems with my left eye after an incident in the garden with dirty water. I had a mild infection, I took cream, drops and antibiotic pills but my eye did not get better. the GP thought I might have an allergic reaction (In one eye) The list of drops and theories was long and scary (at some point I though that I was losing it). This happen at the same time with other issues like a cough and a lung infection. I took again antibiotics and antihistamine, the infection and the cough went a way but the eye grow increasingly bad.

I started to have pain next to the eye (like muscular pain). it took me three ophthalmologist (I am not taking into consideration the number of time I went to the emergency and the GP) to find that I had a blockage in the tear duct but in the scam the shape the sac has was funny so they thought I might have a tumor. I was lucky that I did not have a tumor, but I had a mass so they did a biopsy that came inconclusive but the clean the tear duct and put a tube.

Now, I have a very nice, clean an wonderful eye but I still have pain under the eye and I think I have the same pain in the other eye... but not as strong.

So the Ophthalmologist refer me to a ENT (just to keep my sinus under control) and the rheumatologist...

I have a few options. One is wait and see. The second is to go to a regular rheumatologist and the third is going to the ENT because I always has running nose and see what she thinks...

with your expirience, my story resonate as Wegeners or not and what will you do?

Thanks for the help.

Oh my goodness Karina! This is almost exactly like how I was diagnosed. I also had a type of infection in my eye that wouldn’t go away. Then they thought I had a lacrimal gland tumour & a biopsy was performed. It showed I have Wegeners. So basically a little science behind this disease to make you understand a little bit better. With WG you have antibodies to neutrophils which are a type of white blood cell. For some reason this has affects on small blood vessels, such as vessels in your eye, lungs have a bunch of small vessels as well as kidneys. The antibodies make the neutrophils leak it’s contents which is irritating to blood vessels (its irritating because the contents of the cell is what kills bacteria) and after awhile inflammation occurs.
I suggest seeing a rheumatologist to get a diagnosis. Good luck! Keep us posted.
Natty


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[kcabrera3]

thanks to all for the answers,

I think I am a bit in shock.


. If the local rheumy seems to be stymied about what you have, perhaps a referral to Dr David Jayne at Addenbrooke’s Hospital in Cambridge would be appropriate.

It is a pickle. I was talking with my OH about going to the local rheumatologist and my husband thinks that is a waste of time because it is likely he will refers me to someone else. So, I am going to call hammersmith hospital that seems to have a nice team and it is not as far as cambridge but if something go wrong, Cambridge is the next step.

Thanks

[vickivee1961]

My first symptom was my eyes in 2016. Attributed to allergies. Then frequent lung issues, bloody urine. All attributed to something else. Finally diagnosed in January of this year after open lung biopsy. I agree with the replies above. I'd go straight to Rheumatologist.

[Pete]

Just to make sure you’re aware: Dr Jayne at Addenbrooke’s is a world class Vasculitis specialist. Several UK-based forum members see him.

[Alysia]

Hi Karina.
I live in Israel. Wg is rare here even more, and docs are ignorant. 2.5 years ago I suspected wg involvemt in my eyes (I had episcleritis). I was able to find an eye dr. Who just came back from London. She worked there for few years in Moorfields Eye Hospital (I guess you can find it easily) in a department for vasculitis. I think you need to try them.
Eyes involvememt is comon in wg and should be diagnosed and treated as fast as possible.

[BenHornsby]

Hi Every one, my name is Karina, I live in London where is spring finally!

I have been writing this over and over because I cannot understand why my Doc think I might have Wegeners but I would appreciate if someone have a similar experience than mine and can share it with me so I can have some perspective.

In Jun/Jul last year I started having problems with my left eye after an incident in the garden with dirty water. I had a mild infection, I took cream, drops and antibiotic pills but my eye did not get better. the GP thought I might have an allergic reaction (In one eye) The list of drops and theories was long and scary (at some point I though that I was losing it). This happen at the same time with other issues like a cough and a lung infection. I took again antibiotics and antihistamine, the infection and the cough went a way but the eye grow increasingly bad.

I started to have pain next to the eye (like muscular pain). it took me three ophthalmologist (I am not taking into consideration the number of time I went to the emergency and the GP) to find that I had a blockage in the tear duct but in the scam the shape the sac has was funny so they thought I might have a tumor. I was lucky that I did not have a tumor, but I had a mass so they did a biopsy that came inconclusive but the clean the tear duct and put a tube.

Now, I have a very nice, clean an wonderful eye but I still have pain under the eye and I think I have the same pain in the other eye... but not as strong.

So the Ophthalmologist refer me to a ENT (just to keep my sinus under control) and the rheumatologist...

I have a few options. One is wait and see. The second is to go to a regular rheumatologist and the third is going to the ENT because I always has running nose and see what she thinks...

with your expirience, my story resonate as Wegeners or not and what will you do?

Thanks for the help.Hi,

As all the loverly people above have said, please push the rumatoligy department to see you!

I got my GP to refer me as she suspected a vasculitis problem and Rumatoligy have been amazing, my rumatoligy doctor has now retired (he was very interested in my case) so now seeking a referral to Dr David Jayne (thanks Glider for the nod to him) as the new doctor seems just to push me out the door as a number, but she's very quick to see me when I need, she just does not have the interest in my condition or my confidence.

Good luck

Ben x

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[kcabrera3]

Up date,

First, thanks for your help, I truly appreciate. I went to Addenbrooke’s Hospital with a different doctor but a very competent one. I had blood, urine and an chest x-ray and they cannot find sings of Wg but he said that I need another eye scan to see if the shape or the size of the mass have changed, if that so, another biopsy.

I am truly confuse and tired. At this stage I want treatment for the inflammation and wait and see. I worst part, I asked him if I do not have WG what do I have. "undermining dysomething" so, if they do not find what it is I am going to the box of an undermining condition. YUPI!!!!

Thanks for your time and your answers...

[ChicagoGuy]

Did any Drs do a Anca, Proteinase PR-3, and a MPO Test to see if they are elevated, the chest Xray wont show anything unless you have masses in your lungs, doesnt sound like you have GPA, because when it comes on your going to be in a lot of pain and usually the sinuses will bleed and have a yellow tint to the blood, i was diagnosed in 2014 and had many flare ups. Hope they can find an answer for you

[drz]

One of my first symptoms of Wegs long before I got sick enough to get diagnosed withWegs was scleritis in one eye. The optometrist prescribed treatment that solved the issue but mentioned that it could be a symptom of an underlying systemic disorder. And this proved to be correct a couple years later when Wegs was finally diagnosed after more symptoms and becoming very ill.