thank you for responding discouraging when drs tell you we will try to make this more comfortable for you (fix it!). this is my first time to vent on this subject so give me some latitude for a bit three years is a long time. More I also had a general depression and panic attacks before this started was seeing a psychologist and he became more than a dr but a friend. He retired but we still communicate some its hard for me trust to talk went through 4 others before him. Adding the steroids only compounds that issue to withdrawing more wore my wife out to the point she is tired of hearing what happens sometimes. As a side note she has a stroke at age 42 in 2001 so her health isn't the best either we try but it is trying maybe I just need an ear. How do I reach @jenner his issues would have started at about the same time.

Hello @spice

I'm glad that you added some information to your background of physical and emotional health difficulties, including those of your wife. You are both dealing with a great deal right now. I'm so glad that you reached out - Mayo Connect is a good place to vent!

I'm glad to hear that you have a supportive person in your life - your retired psychologist sounds like a real gem! His continued friendship must be very encouraging to you now.

I realize that you have seen a lot of specialists - however, if I may ask: have you been to a large university medical and/or research center? Are you near a Mayo Clinic location (Minnesota, Florida and Arizona)? If you would like to seek a second opinion at Mayo Clinic, you can submit an appointment request here: http://mayocl.in/1mtmR63 Often, after the first consultation, Mayo experts can work with a local provider to continued care.Also, Mayo has a Mayo Clinic Care Network. Read more about the network and facilities here: https://www.mayoclinic.org/about-mayo-clinic/care-network. These are hospitals in various cities that are connected with Mayo and are advised by Mayo doctors.

Often at large medical centers, where there is a plethora of specialists, you can get answers that you might not find in other hospital systems.

In regards to your question as to how to reach @jenner - Just start a post and begin it (as I did with yours) with @jenner a the top of the post.

I wish you and your wife well and encourage you to keep venting and posting to your heart's desire 🙂 Here at Mayo Connect you have many listening ears that will be happy to listen to your situation and share with you.

Teresa

Hi, @spice. You have all the latitude to vent as much as you like here. We are listening.

If you'd like to send a private message to @jenner, you can also click on "@jenner" in any of his posts, and that will bring up his profile. Under the description of him at the top of that page, you will see "Send private message." If you click on those words, you will automatically be started in sending him a message.

You also mentioned your wife had a stroke and her health is not the best. I thought you might like to meet @IndianaScott, a volunteer mentor who works with our Caregivers group, here: https://connect.mayoclinic.org/group/caregivers/

You mentioned you cannot taper to 5 mg of prednisone. Are you experiencing symptoms when you go down to that dosage?

may sleep 16 or more hours a day nausea confusion but also had this dosage for this long of time its the same. The steroids begin to work adversely on soft tissue I cant think as clearly as I would like don't have the stamina I should and for someone that has worked with his hands and mind; well you know. My wife and I never had a convential marriage she worked in the city as an attorney I raised kids and lived as she calls hand to mouth always taking jobs with enough flex to be there for the kids. She is still able clumbsy with her right side and having more trouble using the right words at times. Are you familiar with show animals? If so I can tell more stories about how I got here,

Teresa We began with an doc from ou med center felt like a lab rat he always had students with him. my last dic punted and suggested mayo but on limited incomes that is hard to do.

reply ended up below somehow