Aneurysms in my hands

[Ruotsi1]

I am going to see dr. Villa-forte on August 12th. I am really excited as I have heard many great things. One thing I would recommend doing is having a paper copy of everything that is faxed. I've heard several stories where the docs didn't end up receiving he paperwork or it got lost in the shuffle. I am taking my initial biopsy results, original ct scan, recent X-ray, and the last notes from my rheumy and Pulmonologist. Just a suggestion. Hope it goes well for you!!

[jakekell]

I wish you the best also, spoke to a friend yesterday who has a different autoimmune disease that went to Ville-Forte. This friend loved her, in fact she finally had a name for her autoimmune. I see on this site many people use her so sounds positive. I was worried about the docs being faxed also so yesterday I called her office to verify they did get them. I was concerned as my Rhemy here (will be former) doesn't even respond to phone calls well. I also am picking up my old ct scan on cd from the hospital tro take.

I have fooled around with this rhemy long enough as she is really doing nothing, very slow on everything. Let me know how it goes hope we all get the best help out there we all need it for sure!

[Pete]

One of the unfortunate effects of GPA/Wegener's is aneurysms. These occur when blood vessels are blocked by clots or when they rupture as the blood vessel walls get too thin to contain blood and leak into surrounding tissue. This is one of the nuggets I gathered from a recent Vasculitis Foundation Webinar: VF Road Map to Wellness: Medications: The Good, the Bad, and the Ugly by Dr Kermani 7 22 14 - YouTube

[jakekell]

The Good, the Bad and the Ugly is a good title for anything to do with wg's. Thanks for the info on my situation now do I want to read more on it or hear what Ville-Forte has to say all this is scary as you know.

Mary

[Pete]

Hi Mary

I see Dr Villa Forte. She'll take very good care of you. Before you go see her, it would be good to write your case history (symptoms, dates of symptoms, medications, dates of appts with other docs, etc.) and a list of questions and concerns. Most of us on here who have seen her report that the first appt lasts 1-2 hours. She's very thorough. She's also a good and nice person.

Good luck and better health!

[jakekell]

Hi Pete,

I have heard from several members that the also see Ville-Forte. I am so glad to hear she is very nice (always helps). I think I will do the list of questions and concerns good idea. I did verify that she received my medical records and taking a cd of my old scans as no recent ones as the Rhemy here really has only done the blood work. I did try the RTX infusion, but bad reaction so had to stop. I am wondering what they will use next. I was on Mtx for 4 1/2 years and had infections so a little nervous what is next with the aneurysms. I guess no need to worry as I am already in trouble so will have to do what I have to do. I am so grateful for a God/husband/family that support me 100% so not going this alone and since I found this site, what a blessing I am learning so much and is getting me at last to a good Dr. I have had to many that I now realize weren't really qualified to handle this disease just thought they could. This form is a must for anyone with WG's learning all the time. I have had this a long time and wished I found all of you sooner.

Thanks for your help,

Mary

[jakekell]

I went to see Ville-Forte yesterday and loved her! Everyone was so right about her being so nice, caring etc. The good news is I have NO Aneurysms in my hands or otherwise just a rhemy in our small area that doesn't know what she is looking at. What I have are some type of Churg-Strauss nodules they are in my hands most likely soles of feet they have lesions on them so very painful.

I am have a flare up of the old weggies and going back on MTX beginning this next week. Dr. Ville-Forte told me it will me monitored closely and shouldn't have some of the issues we had last time I did this. I should have gone there a long time ago. I also have no issues with my kidneys so that is wonderful. I feel so good about finding all of the things I did and feel I will be well taken care of here or in FL. Dr. set me up test wise for both MI/FL she said not a problem where I am. Thanks for all the words of encouragement I have had about Ville-Forte she is great!

Mary