Wellness

[LilacTree]

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@GingerPeach wrote:

Is this her, @LilacTree

Dr. Marianthi Kiriakidou

I searched on Google using her first name, physician, and Pennsylvania.

If you click on images, you may even see her picture.

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I did this, we must have been writing at the same time!!  I am so happy . . . I will try to get in touch with her tomorrow.  I never thought of this . . . maybe she went back into practice!!

THANK YOU, HOMEGIRL!!

[LilacTree]

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@LilacTree wrote:

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@GingerPeach wrote:

Is this her, @LilacTree

Dr. Marianthi Kiriakidou

I searched on Google using her first name, physician, and Pennsylvania.

If you click on images, you may even see her picture.

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I did this, we must have been writing at the same time!!  I am so happy . . . I will try to get in touch with her tomorrow.  I never thought of this . . . maybe she went back into practice!!

THANK YOU, HOMEGIRL!!

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ETA:  I note she did start out at U of PA which is when I was seeing her.  Now she's at Jefferson.  However, I did see another doc at Jefferson at the time (10+ years ago) and she was the exact opposite of Marianthi . . . very cold and disinterested.  She's the one who told me "You will have pain every day of your life now."

[LilacTree]

@GingerPeach

I printed out the article as well for the new treatment and will take it with me if I am lucky enough to get an appointment.  I will tell them I was her patient at U of Pa over ten years ago.  She was so young then, I think she may remember. 

And they say "this is just a shopping board and one cannot get anything useful out of it" . . . well we just proved that is wrong!!

[Reba055]

@LilacTree forgive me if I am overstepping my bounds, but you might do very well on a biologic. My mother has RA, Sjogrens, and Lupus, and she is doing much better on her infusion. I know everyone is different, but if you don't stop the progression of RA it will damage your organs as well as your joints. 

Most rheumatologists will insist that you take something at a certain point to remain a patient. That's not unusual due to the outcome of not treating it properly. 

Again, not my business, but I know how horrible RA can be. I feel for you. 

[GingerPeach]

Fingers crossed, prayers said, good thoughts coming your way @LilacTree

I believe something positive is in your future -- and maybe for more of us who have auto-immune conditions. 

Wishing you all the best!!  and hugs!

[LilacTree]

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@Reba055 wrote:

@LilacTree forgive me if I am overstepping my bounds, but you might do very well on a biologic. My mother has RA, Sjogrens, and Lupus, and she is doing much better on her infusion. I know everyone is different, but if you don't stop the progression of RA it will damage your organs as well as your joints. 

Most rheumatologists will insist that you take something at a certain point to remain a patient. That's not unusual due to the outcome of not treating it properly. 

Again, not my business, but I know how horrible RA can be. I feel for you. 

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You are not overstepping your bounds at all.  I don't think I have lupus, but I do have Sjogrens and some signs of scleroderma.  It's the osteoporosis/RA that gives me the most pain.  I also think I may have autoimmune liver disease because of the itching and the fact that my liver is so cystic. 

If I can see Dr. Kiriakadou, I will do whatever she suggests.  I trust her interest and intelligence, as well as her superior knowledge of the disease.

[LilacTree]

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@GingerPeach wrote:

Fingers crossed, prayers said, good thoughts coming your way @LilacTree

I believe something positive is in your future -- and maybe for more of us who have auto-immune conditions. 

Wishing you all the best!!  and hugs!

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Oh homegirl, you have no idea how much you have made my day today!  If you noticed the photos in the article you cited, the hand on the right is how my hand looks now, only my hand is even more bent to the right. 

If I can get an appointment with Dr. Kiriakidou, I will do whatever she recommends . . . that's how much I trust her.  I hope she hasn't changed.  She's so wonderful I hope she hasn't limited her practice.  But maybe she will remember me, I only stopped seeing her because she left her practice and went into research at the time.  Now, obviously she is back.

Do you want to tell me which autoimmune disease(s) you have?  Of course you don't have to disclose that.

Oh, I can't wait to tell my girls about this!!  Thank you again for steering me to that article which put me on this hopeful track!!  I printed it out and see if it can lead me to more information.

Thank you and hugs to you too.  I haven't been this hopeful in such a long time.

[Melania]

Lilac Tree, so sorry you have yet one more thing to deal with that is causing you such discomfort.

I hope you can get some relief with the new doctor or be directed where you can. It must be very frustrating. Take care.

[GingerPeach]

Hi @LilacTree

I'm so glad you are feeling hopeful.  And I really, really hope your old/new doctor will be able to find an update on this research.  (My own rheum doctor is very slow in responding when I ask her about articles and such.)

I have had RA for maybe ten years.  Plenty of joint damage but can still type (but need to watch for those misplaced fingers on the wrong letters, too).

I think you are also giving many of us hope with this upcoming visit (I do hope you can see her) since you said she'd been doing research herself.  So somehow I feel lots of "threads" are being woven together.

[LilacTree]

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@GingerPeach wrote:

Hi @LilacTree

I'm so glad you are feeling hopeful.  And I really, really hope your old/new doctor will be able to find an update on this research.  (My own rheum doctor is very slow in responding when I ask her about articles and such.)

I have had RA for maybe ten years.  Plenty of joint damage but can still type (but need to watch for those misplaced fingers on the wrong letters, too).

I think you are also giving many of us hope with this upcoming visit (I do hope you can see her) since you said she'd been doing research herself.  So somehow I feel lots of "threads" are being woven together.

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Yes, yes homegirl.  I hope I can get in touch with her office and get an appointment tomorrow.  One of the sites says she is accepting new patients, but you never know how old that information is.  And I would plead that I'm not really a "new" patient even though it was ten years ago. 

I remember saying to her that I was "old" and her responding that I was not old at all.  I doubt she'll say that this time! 

I see that your RA is similar to mine.  We can't do much about the joint damage already done, but I would give anything not to be exhausted anymore.  The pain I will probably still have, since it is more osteoporotic, but if I can feel some energy again . . . OMG that would be heaven!!

I feel this thread was meant to be, I really do. It could change my life .  .  . that's really how I'm thinking!!

Go to bed knowing how much you have helped someone today, and I hope I can help you in return.