New Member... possibly. In need of an expert in the field.

[debra]

Hope, good luck! I'm glad they help... Deb...

[Hope003]

Hi Everybody,

Well... It seems the experts are unsure even with all my tests. I'm feeling worse and was allergic to the Plaquenil, that was supposed to help with the pleurisy. My urine is now showing protein, which it never has before. They found osteo arthritis from head to toe and inflammation only in one ankle. The doc said the test was done while I was on prednisone and he would like to see it when I am off the med but I just developed pleurisy again, after being off prednisone for only 3 weeks. They don't want to give me Rituxan and said Metho and pred will not help me. (How does he know that, we haven't even tried it.) I have to say this gets really frustrating. All these tests and all these docs! Dr Spiera has advised me to go to the Cleveland Clinic and see Dr. Alexandra villa forte. I'm trying to figure out how they will be any different there. I have been to all the experts here in NY and all the best hospitals. I would feel really uncomfortable going to doctors who don't know me and my medical history! I have a rare heart condition, DVT's, HF, Pulmonary hypertension, Pineal cysts on the brain, now just told I have 4th cranial nerve palsy yesterday. I'm getting bad headaches, seeing double, scleritis in my eyes, pressure in my head. The Neuro said it could be from the pineal cyst, 1.5 cm, or wegs, he is unsure and said my case is very ambiguous. He went on to explain the medication can kill me and how bad that would be if I didn't have wegs. I think my eyes shot out of my head! I immediately answered, if that's the case, I'd rather deal with the wegs! I developed a rash yesterday and once again today am told I have pleurisy again! I'm back on prednisone and the vicious cycle continues! (Pred = water weight, and it makes my HF worse.) I'm praying and asking God to give me clarity in all this so a correct decision can be made. And traveling to Cleveland would be another whole can of worms! Somehow in all this, I'm still hanging on and thanking God everyday for my life.

Blessings!

Hope003

[Pete]

Well Hope, if you can see Dr Villa Forte, you'll find a caring and knowledgeable doctor. My first appointment with her lasted about two hours. She reviewed my case history from A to Z, gave me a thorough physical, and sent me downstairs for labs. She explained the changes she made to my meds (off ctx - after 16 months- and onto mtx with explanation of main and likely side effects), talked about how I might feel, gave me her contact info, and had me set up a MyChart account. She works well with my PCP.

Lit would probably help if you could take your case history with you for her to review.

In short, I think she's a great doctor as well as a good person. Hope you can figure a way to see her.

[annekat]

That's strange that those well known docs in NY couldn't help you. If you can't make it to Cleveland, you might consider U. of Penn teaching hospital where Dr. Merkel, another leading expert, takes patients. We have just been discussing that with another new member who is making plans to go there. However, if Dr. Spiera recommended Dr. Villa Forte, and considering Pete's experience with her, that sounds like a very good bet if you can possibly do it. It seems very strange to hear a doc say the treatment could kill you, and that prednisone and other standard meds would not help you. I've only heard that once before on this forum, and that was not from a WG specialist by any means. If you have Wegs, you should not be having to wait all this time for treatment. Best of luck.

[Hope003]

Thank you both very much! : )

I'm going to see Dr. Spiera soon, I'm guessing. They called me and told me he wanted to see me, so I'm going to ask him to help me make the connection with the doctor over at the CC.
The doc told me I would most likely be admitted and they would run more tests and do possible biopsy on my lung or kidney. I'm just concerned with my medical history and complications.
The new docs there don't really know me and it concerns me. I'll keep you updated and let you know what happens. I do have to say, it sure is nice how you all offer your help each and every time!
Thank you Pete and Annekat. You know I thought it was strange when the doc said it could kill me and the Metho and pred would not help. I should have asked why not. I'm going to ask Dr. Spiera that
question when I see him!

Thank you both again!
Blessings!

Hopeful : )

[MaxD]

Hope, I wish you all good luck. You've had a lot of serious complications and I can understand why Dr Spiera wants you admitted in a center where he knows and trusts you will get the best comprehensive care, beyond just rheumatologists. Do express all your concerns to him - I am sure he will consult extensively with the Cleveland Clinic docs beforehand so they will know all about you before you get there - the same goes for your cardiologist who you have faith in. These folks are professionals who don't involve their ego in caring for patients.

[Hope003]

Hi MaxD,

Thank you so very much! Really! All of you!
Your words and thoughts and caring ways are beautiful and I just thank God for each of you and all your help and advice.
It truly does help! A LOT!!!!

Blessings!

HOPEFUL!

[drz]

I would be very comfortable with such a recommendation from a known expert referring you to a another well known expert facility where they hopefully have the necessary skills to help you. All your records and back ground can be sent to them so they won't be starting from scratch. Places like Mayo and Cleveland enjoy the challenge or sorting things out for you since that is how they got their reputation for excellence. Good luck.

[Hope003]

Thank you Drz!

I saw Dr. Spiera on Thursday and he kinda changed his mind. He now wants me to see a lung specialist at The Mayo Clinic in Minnesota! He said this is not acting like Wegeners and he wants this lung doc to be my pilot.
To be completely honest, I'm cooked! LOL I just wonder how can so many things go wrong inside a persons body. Dr. Spiera even shared this is extraordinary and questioned me about the positive ANCA's again.
He said it's really rare for both to come back positive... but I keep saying maybe the lab made a mistake. They must have done 5 or 6 ANCA's now and they are all negative! Maybe the lab made a mistake. It's possible. (I already said that huh.) LOL
Anyway it would be nice to have a team of doctor's take a look at my case and hopefully figure out a way to help me. I'm feeling really weak and now losing my voice. I'm sick with pleurisy again and back on steroids. I mean kinda struggling to just talk sometimes and I never felt like this before. Thank you all for your insight, help and support!

Blessings!

[drz]

I again would also be very comfortable with this recommendations. The experts meet often at conferences and know who is doing what and each others areas of expertise. Do you know who at Mayo? I am going to see my Weg expert at Mayo in July and he is doing a lot research in this area.