I saw an amazing local doctor who is convinced that I do have a connective tissue disease. He noticed mention of granulation tissues and eosinophils in my pericardium, elevated inflammatory markers and symptoms. He wants me to start with a biopsy of the sinuses. He also wants the chest ct redone at a Morristown Hospital where he knows a radiologist that is top notch (from HSS). He said that I need a team of top notch specialists who will work together. He mentioned Someone who is one of the top rheumatologists in the state. I had tried to get an appointment with him but the wait for new patients is a year. This doctor has worked with The rhemoyologost and could get "complex" patients in quickly. He wants to meet with me again next week for an extended appointment (2 hours) to go through all of my records and come up with an action plan. He is going to put together a group of doctors including Ent, rheumatologist and pulminologist. He said that the neighborhood specialists don't have the expertise required to dx someone complex like me. He will get me into the doctors he feels have the expertise. Best of all he has collaborated with them before.
I have not felt so hopeful in a long time
Long time
Good for you!!!
After my Tuesday Appointment, I will know for sure if I have finally found the right doctor
Congrats roxy its an amazing thing to find good doctors not to mention a whole team
That is great, so happy for you that you found a great doctor and he is getting together a team of doctors for you. It can be exhausting when we have to be our own advocates for our health. It sounds like you are in great hands. Keep us posted.
Blessings
Stacey
Great! I finally found a rheumatologist who works with a hematologist and an endracrinologist (sp?) on my lupus based problems. I think that this is probably the best treatment regime I have had in years. It seems that having lupus requires more than one specialist as so many facets are involved with each individual. So, again, great....I think you are on the right path.
This is what I was looking for all along. I am trying not to get my hopes up too much until I see the doctor again on Tuesday and actually start to nail things down. Hopefully he will be able to make a call to the rheumatologist and get me in ASAP instead of waiting the typical 8-12 months for an initial appointmen.
so happy for you a great team of doctors is the way to go. i pray that it all works out with the dream team (smile) God is good ! be blessed godsgirl
Roxy and Linda, please put your doctor recommendations on the Recommend a Terrific Rheumatologist discussion. Thanks!
Wonderful news for you! It is also great to hear of doctor's that speak to each other about patient's. I hope you find the answers you need to be feeling better soon!
Where do you find the recommend a terrific doctor?
J, Thank you. Here is the discussion to recommend a doctor-
http://forum.lifewithlupus.org/forum/topics/recommend-a-great-rheumatologist-positive-reviews-only-please
Hugs!
J said:
Where do you find the recommend a terrific doctor?