Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Susiecue, this is wonderful news. Let us know if you find out when you are going to Mayo. I'm so glad to see that some insurances still give us hope. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Susiecue, Glad to hear your insurance will cover Mayo. Clinic. Let us know what happens. I'm hoping this will give you some answers and you get the appropiate treatment. Sandy Subject: Mayo Talked to my insurance co. this morning. They said as long as the PCP gives me a referral that has been approved by the site that I belong to there is no problem getting coverage to go to the University of Illinois or Mayo. So I will work on that tomorrow when she is in the office. SusiecueDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 I just talked to Bradley, Phd. He is doing research on RP. He first started at Mayo Clinic and did research with Dr. Havey Luthur there. He told me that Dr. Luthra is an expert in his opinion on RP and that if any one wanted a great dr to see him. Just thought I'd pass this along. Dr. Luthra and started doing reseach for RA and were working with mice when they discovered that half the mice had joint involvement and have developed ear and nasal cartilage involvement. This sent Dr. Luthra on to researching RP. Hope to get him involved with the RP Foundation. Just thought I'd send a little update hugs See we the Foundation is making great progress already. Please send your donation in if you haven't already. We are finding lots of researchers and we want to be able to help them find a cause and a cure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Susiecue, thanks for the update. Gosh I hope something happens for you soon. As I mentioned earlier, Dr. Harvey Luthra at Mayo might know of a rheumy in your area. I'm going to try to get ahold of him and see if he can send us a list of doctors with knowledge of rP. Can't hurt. All he can say is no. I stressed to Bradley that not ALL rheumy's know about RP and how to treat it. That surprised him. I think it would surprise Dr. Buckner too. I think she is under the impression that they all know about it. We really need to spread the word. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Sue, it does seem like a rock and a hard place, doesn't it? When I went to see Dr. T in Boston, I really didn't care if my ins paid for it, mentally I HAD to go, and I am glad that I did, and my ins did finally pay for it. If you feel strongly about Mayo, and you can afford to go without ins paying for it, go. It's worth it just to know that everything is being done that can possibly be done! To save money, see if your doctor can do all the tests before you go and bring the results with you. Let us know what you decide. It's such a frustrating disease, you never know if how you are treating it is making it better or worse! Hope your's get better and SOON! Love, Judy Mayo Talked with my PCP this morning about all that is still going on with me. We talked about Mayo & she said when she talked with the rheumy last week he didn't see the need for me to go there because they will just put me through a battery of tests & try some other drugs, so it's a waste of time & money. There are no specialists out there that can do anything different than he can. Ted says he must be really smart. My PCP said she doesn't think the insurance will cover the visit there but if I really want it she will see what she can do. I have an appointment with the rheumy on Thurs. & Ted is going to go with me. For four months that I have had him I have gone in with the same list of complaints & nothing has been done. I am tired of not feeling good. I questioned the PCP about my swelling feet. I told her that I know one of the side effects of Imuran is swelling & the feet didn't start until I went on the Imuran. I can't live like this. They are swollen when I wake up in the morning & get worse as the day goes on. They don't want to give me water pills because this is a different kind of swelling & they probably wouldn't help. I am also having incontinence problems ( & I had surgery with a sling put in Sept. 2000) & it would only make it worse. I feel like I am stuck between a rock & a hard place. Will keep you posted as to how things go Thurs. Luv ya, SusiecueDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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