U of Michigan outcome

[chele]

Hi All,

Well, had the visit to see what the results of all the tests. 
     ANA - negative  (after 2 different tests done previously showed 2.94)
     Lip Biopsy - strong positive
     Heart ultrasound - normal adult heart murmur

So, I positively have Transverse Myelitis.  I positively have Sjogren's.  I do not have Lupus (at this time).

I will have another MRI done this Sunday.  After the reading of that is completed, my doc and the director of Rheum. are consulting with neurology to see if any new lesions have formed and if they feel chemo (Cytoxin) is necessary to slow my immune system down.    Hopefully within 2 weeks they will see me to explain their recommendation.   

I'm still very glad I am going to U/M.  I really don't know which is the best way to go - chemo or the 'wait and see' approach.  Each has their drawbacks - hazardous drawbacks.   

Has anyone had Cytoxin treatments?

Thanks for your prayers and concerns.

GOD'S BLESSINGS TO ALL,

Chele

[eyeamdry]

Hurrah Hurrah Chele, for getting a diagnosis!!!  THAT seems to be the first and biggest hurdle we often face.  Good luck and keep us posted about your situation.

Hurrah.......Go Michigan.............. OH, I think that is Michigan State, not U of M...but anything MICHIGAN rocks.
Lucy

[Mike Bartolatz]

I havn't personally used Cytoxan but I know several people with various forms of uveitis an inflammatory eye disease who have,  even a 9 year old child with Pan uveitis, a very potentially blinding eye disease who is also ANA positive with possible Juvenile Ideopathic Arthritis.  it saved her vision.

We make decisions based on our own needs Chele and those of our family members.  once made we can't look back to the 'what if's' of life.  your decision will fit your book of life and with considerable thought you will reach a decision that YOU can live with.  please know that we will support you in whatever you choose.

God Bless my friend,
Mike Bartolatz

[irish]

Chele, Glad to hear that you have some concrete answers. I am sure it is a tough decision as to treatment. I guess I would opt for the Cytoxan as a friend of ours is on that for his Wegeners. I am not able to take any of the DMARD's as I have the low white cells and am extremely high risk for infection. I am on the immune globulin infusions monthly and would give my right arm to be able to take Cytoxan or something to be able to slow down the neuro immune attack on my body.

You will just have to do what you think is right. I would ask the docs what the danger is of not taking the Cytoxan as far as loss of neuro function etc. Good luck with this. IRish

[chele]

You bet, Lucy!!!  Now on and on we go.

Hey, you keep the Hurrahs going - now for you.  You have some yucky diagnosis, but you can overcome!!

This is a tremendous journey for you - I'm sorry your in it - but hold on tight!  You'll make it!!  I'm cheering for you, Lucy!!!!

Chele

[chele]

MIKE -
Thanks -  I have learned ( and keep re-learning! ) that this is my life and I can only make decisions for me.  I take as much info as I can from as many sources as I can and then decide for me & my family.  Mark is a great help in making these hard decisions with me.  We talk about options and outcomes, but he then allows me to decide (with his thoughts too!!).  Mike, thanks for that support.  I know I will need it throughout this journey!!

Irish -
Thanks also.  Your comments are what Mark and I have also talked about.  The consequence of letting my out-of-control immune system continue to attack and break me down to the point of no return- scary.  I'm so sorry you're at that point.  I do pray for you at this moment that the attacks will slow down and your body will build up.  We (docs, Mark & I) did talk about some outcomes of both choices, but doc really wanted to wait to talk with neuros for complete info. 

Mike & Irish, I do count you as friends and am very thankful for you!!  May God continue to bless you throughout your journey, but I ask for special blessings tonite for you both.

Chele

[Pooh]

Hi Chelle,
So glad to hear you have a definite dx.  Not happy it has to be what it is, but I guess knowing is better than not. 

I know with your doctor's information and the love and care between you and Mark, you will all come to the right decision.  I know in my heart there is also someone else working with you and He never lets you go the road alone. 

Hugs and God Bless,
Pooh

[chele]

Pooh,

Yea, I know what you mean about the dx.  It's funny actually.  Mark & I both stated on the way up to Michigan that we were both concerned the docs would say there wasn't a reason for all that was happening.  So, in reality, we were relieved to hear a diagnosis!  What it is, is not good - but not knowing what it is, is worse. 

You are so right, Pooh.  I see that He had prepared me for this road by placing many disciplines in my life and He has not left my side for a moment!  It is so great to have that comfort.  I am so glad He is your comfort too!!  The journey is hard and trying, but He never gives more than we can handle-because He is there carrying the burden - if we let Him!! 

Hugs, prayers, & God's blessings for you, too, my friend! 

Chele

[jangytexan]

Chele and Mark;

It is a relief when you have names to call the things that turned your life upside down.  It is almost like 'Oh, that is what it is, now I can FIGHT back!' 

I am on Methatrextate, which is a mild form of chemo due to the mg. you take.  Still side affects for me did not out weigh the hope of slowing this thing down.

Off, today at noon for our 3 hour treck to San Antonio and the Hospital.  New (additional) DX's of Autoimmune liver disease means a new whole round of test???

Russ has really been hit hard this time and with his diabetes, heart andright  knee needing replacing (left one has been replaced) he is worn down too.

He says we are the blind leading the handicapped.

jangy

[Mark54]

Chele,
     I enjoyed the trip we took to U of M yesterday! How about us doing that again on Sunday? Our car knows the way now, so both of us can take a nap on the way home. Well.... maybe not! Some how our date night has turned into trips to Michigan. Thats OK, being with you is all that counts!! What would our lives been like if you would of never ask me out for that first date? I'm glad you asked (Lord knows I was to shy)!!!!! Love you!

God's blessings,

Mark....

[LenV]

Chele and Mark,
I'm so very sorry to hear of the diagnosis.  But I'm glad you have a name for all of this suffering.  You are so very lucky to have each other and your faith.

I wish for you more happy days and better health.
Billye

[jangytexan]

Great news