Referred to Cleveland Clinic

[yorkieville]

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

[crystaly]

hi i posted further down but its got bumped. Sounds like progress sorry cant help with the reults but at least your on you way to someone who may be giving you the answers you need . It must be quite a shock at the moment though ! I will be thinking of you I wish you all the best for your journey and lots of huggs!! from me to you .chris from the uk

[yorkieville]

Hi, Chris. Yes, I am in shock. Can't think how to get the girls and myself ready. No one to leave them with right now. Chris, thank you so much. Believe me, I am grateful for your kind thoughts and I send hugs right back to you! Sheila

[crystaly]

Have you not got any close neighbours who would look after your little ones ? Bet you didnt expect that at all! I,m sure someone will know bout mayo ive heard its very good though! Also they will be able to help with the tests results sorry cant help you there I will leave the post for other people to answer your queries ! Huggs !! again  !! xxx chris

[Momzilla]

Lucky you!

What an absolutely wonderful doctor you have!  Although it seems to me that you have enough for a diagnosis, I think it's awesome that he is humble enough to say he isn't comfortable with his, I guess skill? and is not willing to let you wait!  Good for him!

He is sending you to the right place!

I know you will get it all together for the trip and you have enough evidence for the CCF to put it all together for your diagnosis!  I'm just sorry it's going to be so inconvenient for you.  

You'll be in such good hands there, Sheila.  And with the results your doc will send, and the testing they will do, the next we'll hear from you is what kind of treatment you're starting and how wonderful you're starting to feel!  I can't wait to hear!!!

God's blessings!  Let us know how the arrangements are going!  Good luck!

Zilla*

[yorkieville]

Chris, my neighbors are all elderly, and I wouldn't impose on them. They already take care of me, visiting me, baking me cookies, bringing me fresh fruit, and most importantly, praying for me. My  Yorkies are little houligans and might be too much for them to handle. My sister is in the hosptial, revovering from her hysterectomy.Yes, my Neuro thinks Mayo is very good, but felt Cleveland would be more willing to see me, sooner.  XXX Sheila

Zilla, I agree, I think my doctor is absolutley wonderful! I chose him, myself, after he had done my EMG in the hospital last Feb. He was so kind, and careful, and treated me on such a human level, that I thought, if I ever see a Neuro, it's going to be him.

He said he was not comfortable labeling me with MS, as it is a lifetime of treatment, and treatment is expensive. (Gosh, why didn't the Gyne at U of C have that compassion?)

I'm very happy to be going to the Cleveland Clinic. Some of the doctors have answered questions for me in other forums here and they have been so helpful, and so nice.

My paperwork says I have 2 oligoclonal banding CFS   No Monoclonal Protein present. My brian MRI report says there is a single T2/Flair hyperintense focus in the periventricular white matter. adjacent to the posterior body of the right lateral ventricle (axial FLAIR image 14 of 24) It measures 6 mm in diameter.

I think we are going to take the travel trailer and DH can just leave me at the clinic and go back to the KOA with the Yorkies. I know this sounds crazy, but I'd rather he remain with them so I know they are safe and not frightened.

Do you know what kind of tests they might run? I am wondering if we will have to remain in Cleveland very long.

Zilla, thanks for being so supportive. I just feel like I am not making much sense.

XXX
Sheila

[T-lynn]

The cleveland clinic is an awesome facility,who will you be seeing?

It might be a little longer than 5 hours,I live in ohio and I am an 1 and half hours from Fort Wayne and it takes me around 2 .5 hours to the clinic.

Give yourself plenty of time to get there

[yorkieville]

Hi, t-lynn. That's great to hear! I am seeing Dr. Rebecca Kuenzler.

We are planning on leaving tomorrow and staying overnight, so I can be fresh for the appointment Thursday morning. I hate to be late. As a matter-of-fact, my family says they can set their clocks by me. :)

[grannyhotwheels]

I'm so happy for you.  This is definitely a step in the right direction.  I'll bet you have a diagnosis before you leave there.  I can't wait to hear.  Hey, if you really like it there and think it's a good place to recommend, let me know.  I just might have my doctor send me up there.

I'll be praying,
Carol

[yorkieville]

Carol, thank you so much. Gosh, I hope your right and I do come home with a diagnosis. I was a little hesitant to go at first, sat in his office thinking, "How are we going to afford this?" but I wasn't about to offend my Neuro, because I trust his judgment. I will most definitely let you know if I think it is a good place. I appreciate the prayers. Right before I left for my Neuro appt. today, I said my prayer to St. Anthony. (Only for the millionth time.)  I think I'm getting the answer. :) XXX Sheila

[pennst8r]

I have an appt with Dr Kuenzler tomorrow morning! Too funny.  Good luck

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

Penn

[yorkieville]

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

[T-lynn]

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

[Quixotic1]

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

[yorkieville]

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.

[T-lynn]

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.

[LLWB]

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.

[LLWB]

Can't get fingers to work! MapQuest is what I meant to type.LOL

[Mark Simpson]

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

[yorkieville]

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

[yorkieville]

Thanks so much for the directions. Oh, believe me, I intend to be completely candid with Dr. K.

[yorkieville]

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.

[yorkieville]

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

[pennst8r]

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

[yorkieville]

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