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Referred to Cleveland Clinic

Hi, Everyone. Just home from my Neuro appt. I promised to post. He referred me to the Neurology Dept. at Cleveland Clinic (what a coincidence that I joined here!) and my appt. is this Thursday morning. Said he's not comfortable saying its MS, and is not comfortable waiting in view of my symptoms. My EPs were negative, CSF with 2 bands and inc prot 60s. He said he is not comfortable waiting to see if another MRI would show more lesions. (Just had one white matter lesion) He said my spinal fluid showed two antibodies. This is all Greek to me. Somehow I have to get ready to leave tomorrow.  I think it's a 5 hour drive from Valparaiso, IN. Has anybody been evaluated there? I know I'm just rambling here, I'm shell-shocked. So, please forgive me.
XXX
Sheila
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220917 tn?1309784481
Great!  I'm at work, but when I get a minute, I'll check!  So glad you posted!
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Avatar universal
I posted a new topic to tell briefly what has been going on and to ask a question.

Yvette
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220917 tn?1309784481
Hi, Yvette!
Good to see you back!  Welcome again!  Hope you are well.

Zilla*
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Avatar universal
I can't wait to hear about your appointments.  I'll be checking for updates throughout the day.

Yvette
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Avatar universal
We've never crossed paths but I'd love to know how your appointment turned out, any word yet?

Johnny
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220917 tn?1309784481
Penn!  Tell us!  I'm dying to know!

Zilla*
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Avatar universal
I'm glad you liked DR.K I knew you would.

I'm interested on how your appointment went and what she had to say.

I hope you adjust to the med she gave you.

T
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220917 tn?1309784481
Hi, Sheila!  

I'm so excited for tomorrow -- I hope you get this!

Hugs and prayers,

Zilla*
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222135 tn?1236488221
Can't really write now. New med Dr K put me on is killin me with side effects.

She is indeed very attentive and thorough. Everyone, including the doormen, are so incredibly cordial and helpful. You will like her. Write more tomorrow - and you can write about yours!

Penn
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Avatar universal
Penn, You sound so organized! Thanks for the advice to go to the CCF web-site. It really wound have been nice to meet.  Fingers crossed and praying your appt. gives you the answer. I've been up half the night and after 5-6 hours in the car. I'll be plenty fatigued. :)
Talkk to you soon.

XXX
Sheila
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222135 tn?1236488221
OK, it's 4am and I'm geting ready to leave for CCF - my doc told me to get up really early and take a hot shower, since my appt is early. Mornings are good for me, so this will "help" me have some fatigue anyway, like I have in the afternoons. I'm about 3 hrs out of Cleveland. Besides doing a Mapquest, go to the CCF website and print off the info about the construction in and around the campus. Very handy - there's a map of campus too.

It is too bad we're not there at the same time - would be fun to put a face to the screen name!

I'll check in with you when I get back. Take care

Penn
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Avatar universal
Hi, Mark. I feel in a whirlwind this is happening so quickly. Thank you so much for the thoughts & prayers. I'm so glad someone understands about not leaving my Yorkies with someone. The person (my best friend) I trusted to leave them with on rare occasions passed away 2 years ago. I don't know how long we'll be there & I really would miss them. My tiny one is a real "Mama's Girl" and has to be in the room with me or she squeaks. She suffered terribly while I was in the hospital last year. I love Pom's & Chi's! Two of my great aunts had Chi's when I was growing up and they were darling. These little dogs really can be hooligans.

I'm grateful my Neuro referred me & I hope & pray that I come home with a dx.

I promise to post as soon as I return.
Sheila
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Avatar universal
Hi LL. My fingers work the same, and I guess my brain has adjusted 'cause when I read "MapWuest" I saw it as "MapQuest" so no problem. :) They actually used MapQuest at my Neuro's office and printed out the directions for us yesterday. Are they thorugh, or what? :) Nice to meet someone else that hates traffic.  Thanks so much. I will definitely let everyone know the results.
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Avatar universal
Thanks so much for the directions. Oh, believe me, I intend to be completely candid with Dr. K.
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Avatar universal
Hi, Quix. May I say the medical profession lost one of the aboslute best to MS, whn you stopped practicing? Quix, I can't imagine a doctor lying awake at night worrying over a patient, and then phoning the mom, etc. I wish you were my doctor. But I agree, I like my doctors plan for me. (It IS fast, isn't it?) Here it is almost 2 in the morning and I should be sleeping, but alas, I cannot sleep. (what else is new?) Thank you for all the advice. I actually made notes. :) I figure this is my best chance of a dx and I am not going to blow it. I'll post as soon as I'm home.
xxx
Sheila
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Avatar universal
It's wonderful that your going to be seen and so quick! My thoughts and prays go with you, and you are 110% correct in your assesment of the little ones, being "houligans". I have a pom and chiquawa and they have so much energy I can't imagine them staying with soemone else, besides the fact I would miss them dearly. I didn't even care for chiquawa's until my daughter brought one home... what a wonderful little friend she has become.

I'm sure your going to be treated wonderfully and hopefully you'll get the answers you deserve. I have found that most of the top notch facilities and clinics also have the most caring and compasionate people on their staff. My daughter was treated wonderfully at the Lenox Baker Childrens Hospital at Duke University and I'm sure your stay at the Cleveland Clinic will be just as nice.

Keep us posted. Thoughts and prays go with you!

Mark
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Avatar universal
Can't get fingers to work! MapQuest is what I meant to type.LOL
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Avatar universal
Have you used "MapWuest" to chart out your route? It will give you directions down to 1/10 of a mile, street names, etc. I never go to any "big"city without it. Good luck, I live in a town of 15,000 people in a little eastern oregon town, so I know how you hate traffic. God Bless, and good luck on Thurs. Be sure to let us know results.
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Avatar universal
you'll go to the s91 building.Use vallet parking if not you'll be walking.Give yourdelf plenty of time.The whole staff at this builing is great.

Just be up front with DR K.

When I left her office I was handed computerized notes of the office visit and her professional opinion.This was after each visit.
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Avatar universal
Hi, T-lynn. I am so glad to hear it. Now I'm really so glad I have the appt. I'm a nervous wreck about finding my way around. I'm  used to the peace & quiet of the country. Hate lots of traffic.
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147426 tn?1317265632
I am so pleased at this development.  And I like your doctor for his sudden reversal of plan.  It speaks well of his compassion and integrity.  Soemtimes, back when I was in practice, I would make a treatment decision, and then find myself lying awake worrying or second-guessing it.  As soon as I noticed what I was doing I would realize that I had taken a risk or made the wrong decision.  Soemtimes I would even call, wake up the mom and admit the child in the middle of the night.  So, I suspect that is what went on.  Some decesions have to filter and percolate themselves down into your thinking.

Anyway, sorry about the rush, but a stay at a KOA, and an evaluation at CCF sounds great.  Remember your timeline, remember to tell them who you were before all this happened and robbed you of the person you were.  Be honest, use your own words in describing what you are going through and don't make light of it.  We have only heard good from Dr. K.  You and Penn are both seeing her this week.  How remarkable!

Bless St. Anthony!!

Best wishes to you and Penn!  Quix
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Avatar universal
Hi, Penn. Your appt is tomorrow morning? Mine is Thursday morning. Gee, I wish our appts. were on the same morning. Have you been to her before? Good luck to you, as well.
Sheila
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Avatar universal
Dr.k is an excellent Dr.

She listens,she's compassionate and doesn't give up on her patients.She finds the reasons why the symptoms.

I see her once a year now,she helped me through a very rough time when I had no DX.

I hope you find her as professional and caring as I did
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222135 tn?1236488221
I have an appt with Dr Kuenzler tomorrow morning! Too funny.  Good luck

T-lynn - don't you see her too?

Penn
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