Brand new and still shiny? Nop I'm old and wrinkled

[John S]

I have been sick for 14 months. it started with massive headaches. I was hospitalized when I realized I was experiencing double vision. The initial diagnosis was sixth nerve palsy. I went home but a week later I was back. The double vision was gone but my right eye swoll so much that it was touching the lens of my glasses. The new diagnosis was orbital pseudo tutor.
At this point I was put on Prednisone. After a few weeks, the soreness in my eyes and headaches were overwhelming. The local eye Doctor said that he couldn't help me. He told me to go to Loyola Hospital in Chicago. The whole time I have been fatigued. Lots of bloody noses.
All of the Loyola Doctors were fantastic. I had a full battery of blood tests . Negative for ANCA but positive for Lyme in the Elisa test. The Lyme Western Blot test has been run three times but I always show up negative.
One of the Loyola eye doctors said that my symptoms were like Lyme patients she had seen on the East coast. The Infectious Disease people would not treat me for Lyme.
Around April or May I started blowing huge buggers out of my right nostril. (Yes I saw the thread on huge buggers)

I had cataract surgery in October, both eyes. I'm pretty sure that was due to the Prednisone.
Around November, sores started appearing on my hands. I saw two dermatologists and had two biopsies. The second pathology report said the sores were consistent with Granuloma Annulare. They have continued to grow and multiply. Recently, arthritis has started into my hands as well.

In January the ENT did sinus surgery on me. She tolf the Rheumatologist that it appeared I had Wegener's growths inside. The biopsy for this said tat Wegener's could not be excluded. It also said that infection could not be excluded.

The Rheumatologist has diagnosed me with Limited Wegener's. I have an appointment at Cleveland Clinic with Dr. Alexandra Villa-Forte on Wednesday.

Like I said at the start, I'm old and wrinkled. I hope to get older and wrinkleder.

[im so blessed]

I Just saw her for the first time yesterday! After having wegs for 16 years and being treated by local rheumys...she was fantastic! I feel sure she will answer your questions and get to the bottom of it. Your blessed to go see her so soon after your diagnosis!!!

[Pete]

Welcome, John!

You're going to be in good hands with Dr Villa Forte. (I've been under her care for almost five years.) She's knowledgeable, thorough, and easy to talk with. Before you see her, you might want to make a record of your wegs experience - dates, symptoms, treatments, outcomes, etc. She will take a thorough history from you. She may order some tests (lab is downstairs from her office). Also, make a list of questions you need answered.

Also, it would be wise to sign up for MyChart. That way, you can get test results on line, get prescriptions re-authorized, and be able to e-mail anynon-urgent medical questions to her. She always responds within a couple of days.

Safe travels! Let us know how your visit goes.

[John S]

Welcome, John!

You're going to be in good hands with Dr Villa Forte. (I've been under her care for almost five years.) She's knowledgeable, thorough, and easy to talk with. Before you see her, you might want to make a record of your wegs experience - dates, symptoms, treatments, outcomes, etc. She will take a thorough history from you. She may order some tests (lab is downstairs from her office). Also, make a list of questions you need answered.

Also, it would be wise to sign up for MyChart. That way, you can get test results on line, get prescriptions re-authorized, and be able to e-mail anynon-urgent medical questions to her. She always responds within a couple of days.

Safe travels! Let us know how your visit goes.

My wife is the queen of record keeping. (If she was drowning my life would pass before her eyes). I'm already signed up for MyChart as well.
Thank you for the welcome.

[Debbie C]

I was just up there last Wed. ,although I see Dr. Langford,you are in good hands with either one. Best of luck to you.


Im so blessed, glad to hear your visit went well. Did she change your meds ?

[im so blessed]

I posted on the Cleveland Clinic Frustration thread. Thanks for asking!


Im so blessed, glad to hear your visit went well. Did she change your meds ?[/QUOTE]

[John S]

I just remembered another couple of my strange road of symptoms. In March 2016 I had a few days where my pulse rate shot up and was constantly near 200. I had to be hospitalized . It went back to normal.
At the time I was occasionally using a walker and wheelchair.
I had a months worth of doxycycline, prescribed by a friendly OBGY (that's what is prescribed to Lyme patients) and did a bit better. I was in the hospital again in April for Sepsis and had an antibiotic by IV. A week later I was riding a bicycle. That level of energy passed quickly.
From Feb-June of 2016 I was very light sensitive, had to wear a cap and dark glasses whenever outside. My wife had to drive us.
Currently, I can drive but wear sunglasses even on cloudy days. The sores on my hands really bother me. I play guitar, ukulele, piano etc (not well) but I can't do that at all right now. My right eye always feels like a little animal is chewing on the back of it. Headaches are very common for me. I take an extra strength Tylenol every 4 hours.
On the Prednisone, I have justified eating everything in sight. My blood sugar has been out of control (I'm diabetic too}. For the last two weeks, I'm back on controlled eating, keeping blood sugar in 75-160 range. A little more energy than usual, I'm able to walk 3/4 of a mile now but still take 2 naps a day.

[Alysia]

Welcome John. I like your sense of humor.

Are you on pred only ? Its not enough to treat wg.

No such a thing as limited wg. This term is misleading. Each wg should be treated seriously enough.

Good luck at the meeting and please update us.

[annekat]

Welcome, John. You have been down a tough road with a lot of unusual twists and turns. We are all a little bit different in how WG manifests itself. It can be so confusing when out there dealing with a variety of doctors. I'm so glad you are going to see Dr. Villa Forte at CC, as I've heard r nothing but good about her. She will get you on the right meds. I look forward to hearing how it goes.

Sent from my MotoE2(4G-LTE) using Tapatalk

[John S]

We will be driving to Cleveland today and seeing Dr. Villa-Forte tomorrow about this time. I have read some of her papers. Since none of my tests have confirmed WG, I am concerned that my current rheumatologist might have the wrong diagnosis. Dr. Villa-Forte has written about WG and diseases that resemble WG but require different treatment. I'm hoping that she can either confirm the WG diagnosis or put me on another track.

[Pete]

If you have any form of vasculitis, she'll treat it.

[John S]

We met with Dr. Villa-Forte this morning. We brought along a file that was thicker than a ream of paper so that she could review tests and reports from my medical history. She asked a lot of questions, did a thorough exam and told me how she would proceed. She had my urine checked for blood - none present and sent me to the lab for blood work. She gave me an order so that I can go to my local hospital and get a cat scan of my sinuses and lungs. The CD's and reports will be sent directly to her. She also had me sign a form so that previous biopsy samples can be sent to the Cleveland Clinic pathology lab for review.

We talked about Wegener's as well as diseases that mimic WG. She spoke about possible medications that I will need, based on the results from the Cat Scans and lab work. I have confidence in this Doctor.

This will be my last entry in the New Member Forum. From now on, it appears that I am just another grunt in the WG army so I will post in the appropriate forum (probably WG chat).

[Pete]

Glad you had a good experience with Dr Villa Forte.

[Alias]

Sounds like you are on a good track to getting to the bottom of things. Best wishes....

[Alysia]

Curious: which diseases mimic wg ?

[John S]

Curious: which diseases mimic wg ?

Google this. Lots of info.