Mayo update

[timer lady]

To begin, I really want to thank all of you for your support & prayers over my health situation over the last year. At best, things have been difficult, the changes in my abilities frustrating & living in the "unknown" maddening/depressing on any given day.

I appreciate your patience with my lack of response to many threads I should have been able to contribute to....but had no energy or couldn't find the words. That may continue for a while.

I left the clinic with a plan! No definitive diagnosis but a plan.

I spent almost 2 hours in rheumatology yesterday morning. I have Cushings Disease from being on the prednisone for so very long (10 months now). My body didn't tolerate the last titrate to discontinue this medication so we are going from a different angle. We have to "convince" my body that it doesn't need this medication anymore. In the meantime, rheum doctor is looking at the possibility of many of the autoimmune disorders, possibly - likely combined with neuro issues.

Neuro doctor is going to be following the d/c of the prednisone closely & working with rheum doctor. She refuses to rule in/rule out anything at this point until the prednisone is mostly out of my system. In the meantime, there are areas of my brain on the MRI that she will be watching closely - it doesn't fit MS to a tee; neither do the lesions, scarring, or "suspect areas" fit Susac's to a tee.

Neuro doctor was most concerned over my last MRI - I was unable to be aroused during & after the procedure plus there was a great deal of movement during the MRI. Apparently all the tests to arouse were tried & after the MRI was complete they brought a doctor in to help. Neuro doctor has concerns over that - not convinced it was seizure activity, not sure what it was. Neuro doctor will be studying the MRIs very closely over the next 2 or 3 weeks.

And I say that because I head down to Mayo again to see rheum doctor in 2 weeks for a follow up on the d/c of prednisone. He may have some test results back to indicate what is going on with my autoimmune system; he would like to introduce a non sterodial anti autoimmune medication if it's indicated at that time.

And I left the clinic yesterday with more confidence that someone had a clue - even though the doctor's still haven't a clue. Or if they do, they aren't sharing. Instead I left with a plan - get off this cruddy steroid & plan on attending my oldest neice's wedding mid May followed by the Mother's Day annual golf outing. (I may not be able to golf well - I can darned well drive the cart & have a Mike's hard lemondade in honor of my mom on the 5th hole with my sisters & SILs.)

Again, thank you for all your support. Keep your fingers crossed that this plan works. I need to be well (functional) again.

 

[Nomad]

I see good news in there...doctors who really care...who are studying closely your test results. Being able to get off of prednisone and possibly onto a non-steriodal medication instead. Sounds like a good plan is being formulated and that you have a great attitude. Wishing you good health and all good things.

 

[wakeupcall]

FINALLY......someone who cares!!!!! I pray they will find the answers.

 

[nvts]

Linda! So happy to see you! Maybe you should be changing your name to "tooatee"!

That's got to be a good feeling that someone, FINALLY is willing to take some control and make some clear decisions.

When I was younger, you went to the doctor and he/she told you what to do. Now it's "go look things up and let me know what you decide". To me, sometimes doctors are just like dinner - tell me what to do, and I'll do/cook it! lol

I'll keep rattling the beads for the wedding and the golf outing!

Beth

 

[Lothlorien]

Sounds like a WONDERFUL plan. I'm glad you have goals to work toward and the docs are being so proactive. You sound like you are definitely in a much better place, mentally if not physically yet. Will continue prayers.

 

[Star*]

Linda,

Sounds like you have a lot of eyes on your particular situation. I think being an enigma makes doctors a little more creative and pursuant to finding a level of comfort that everyone can deal with.

I'm glad to hear you will be shedding your buffalo hump - I keep waiting for horns. And a groovy, furry head-dress.

Hugs
Glad to "hear" you are feeling better. - What is the story about the mikes lemonade on hole 5 - I must have missed something, but sounds like a neat story.
Star

 

[Penta]

A plan is a good thing with MDs following you in all areas of concern.

Wishing you all the best as you move toward recovery!

 

[mrscatinthehat]

So glad that you have something to move toward. I keep you and your family in my thoughts often.

Beth

 

[Abbey]

Awww...Linda, finally you're getting some help.

I'm sure your doctor told you, but go slow with the weaning off the Prednisone. Not nice if you don't.

Looking foward to hearing updates. Take care, dear.

Abbey

 

[DDD]

How wonderful that you are getting professional validation! Just knowing that you have a team that cares about YOU has got to make you feel better from the get-go. Hooray! DDD

 

[Shari]

Finally.

Still may not know exactly where you're going, but at least the train is moving again. Its a good start.

 

[totoro]

Here's to a Mikes and a great DRIVE!!!
Hey, N was born on Mother's Day!!! and you know what brought it on??? husband dragging me out on the golf course and making me hit some balls... I did not feel like it, but after walking a few holes and hitting that darn ball... because that was how I felt about it at that point... N was good to go!!!

 

[Hound dog]

Linda

It is always good to have a plan, and the plan sounds good.

Docs may have ideas about diagnosis (dxes) but may be waiting on more info test results before deiciding. Especially knowing your current frustraton level.

But I think what I think is the best news yet is that you have a team of docs willing to work together to solve and treat this mystery.

I'm so glad you're moving forward again.

((hugs))

 

[dreamer]

You have my sympathy for the unknowns with the autoimmune disorders- my docs could not settle on rheumatic illness, lupus, mixed connective tissue disorder, MS, polyathralgia,
Then once they began to treat, it was the pred that gave me back my life first-
Have been struggling to reduce it or gt rid of it ever since. Even the smallest reduction of it brings back my symptoms almost immediately.
ALas, the darned medications that helped me out are now thinking they would like to do me in. :-(
Such a fine line between positive therapeutic intervention and- whatever.
Seems like on thing leads to another.....
diabetes, liver problems, failing fast eyesight, UG!
I am glad your docs are reactive and working, and also am glad your family stands beside you and also pitches in.
I keep you in my prayers.

 

[flutterbee]

Linda -

I'm so happy for you. Finally, a plan. I so understand where you're at. I don't care anymore what they decide to call what's going on with me. I just want it treated. They can give it a name later. Or never. As long as they treat it.

The autoimmune thing does throw another spin at it as there are so many and it can be hard to distinguish between them. Fortunately, it seems that a lot of the medications for autoimmune illness work for many of the different autoimmune diagnosis's.

I'm so glad you're coming off the steroids. I've been worried about you being on it for so long.

 

[meowbunny]

Another one thrilled that there is a real plan! I'm not dancing a jig or nekkid chicken dance for you quite yet, but a slow waltz around the room for the reality that someone cares enough to try to find some answers.

 

[Suz]

Linda, it's wonderful to see you. Hugs for your courage.

Suz

 

[Wiped Out]

Linda,
So great to hear there is a plan! Sounds like a great team at Mayo.

 

[timer lady]

Thank you all. I agree, it seems I have a good "working" team on my medical situation.

While I may never have a complete or confirmed diagnosis - this team is willing to treat based on my symptoms, combined with a complex hx & not just the "guidelines" for criteria for treatment. I somehow am always at the low or high end of normal in many of the test results. The doctors want to look at the low or high end of normal as into the treatment range for me, individually. In other words, "normal" isn't a word that fits me.

Sounds a bit like the story of the entire tweedle household - don't you think? As a whole, we are quite the family. :irock:

 

[gcvmom]

From our experience with another autoimmune disease, if they can put you on an immunomodulator that does the right job of supressing the inflammatory process that causes your particular disease (whatever that may be), you'll have a much better chance of getting off the prednisone. We went through that with difficult child 1 with his Crohn's diagnosis.

The trick, though, is finding the right medication that you can tolerate and that addresses the disease appropriately. difficult child 1 started on one drug, and although he was able to taper off the pred after a few months, that first drug ended up not being the right choice for him because his liver enzymes started to creep up and he had some breakthrough symptoms. The drug he takes now has been very effective at keeping him in remission for the past 16 months (knock on wood) and he's tolerating it well without any of the potential downsides (liver toxicity).

I like your plan for May It's solid. It's do-able. You go girl!