Been to Cleveland Clinic? + update

[pennst8r]

I am wondering if any of you who've been to CC can tell me a bit about what to expect. Will I go for my appt. then go home, like a regular appt., then come back for any tests? Should I be booking a hotel room? I keep trying to call on my lunch break, but haven't gotten a break lately to do so.

By the way, lymes test was negative. Yesterday had EMG/NCS repeated plus an RNS (OMG was THAT a treat!). No word yet. Not going to stay with this neuro either - her reason for the tests was "transient fatigue and cramps"! Guess that shows how seriously she's looking @ me. I thought the old evil neuro was bad calling spasticity a Dx!

Had a really bad patch for severat days - really hot here -  couldn't even get uo the computer room again. I have a TON of posts to catch up on. It's amazing how much you miss in just a few days! I am having another break from spasms since Monday - only 1 or 2 a day - that's a relief!  I have contemplated giving up on finding a Dx lately too - seems to be going around??? Then I look @ how many times I have to retype everything, can't find the _____ word I'm trying to use, "crash" as soon as the temperature goes up, etc.,  then I can't wait to go to Cleveland. Day or 2 after that, I think about the neuro and I'm back to questioning if it's all in my head. She never said she thinks that, but when I called her to try to get her to see a bad day of spasms, she told me to drink Gatorade rather than come in so she can see for herself. The doc who did the RNS suggested having my husband videotape a spasm or 2 and bring it in. She seemed more concerned re the issues than the neuro! Also asked why no muscle biopsy, LP or repeat MRI. Not going to fight about it - just wait till Cleveland.  It's hard to keep your commitment to fight up! It's hard for me to even get fired up anymore - hoping I don't give up, but part of me really wants to.

Anyway, I digress (for a change)! If anyone has the "skinny" on going to CC, any info would be greatly appreciated.

Thanks,

Penn

[T-lynn]

Dr.Kuenzler redone my mri's,she's very efficient and yes they repeated test I had previously had.There equipment is so more advanced than normal facilities.

She will do whatever she can to get you a proper dx.I have alot of faith in her.She's real sweet.

[pennst8r]

I think they should hire you as medical concierge! You are MUCH more helpful than she was. Thanks so very much. I feel much better now. You are even correct about her bldg. #.

I received a packet from CCF in my mail this afternoon - questionnaire on symptoms, history. Did they do tests, even if you'd had some already? I'm not too confident of the machinery in my neck of the woods. I hope they will redo at least the MRI - it was nearly a year ago and done on a Tesla 1-point-something.

Naturally with this coming up now, I am feeling fairly descent (except for my summersault down the stairs the other day, that is!). Spasms are way down right now. My typing is worse - I have to retype just about every word at least twice. But I'm really not doing too badly.

Anyway, thank you SO much for your info. What a help! I feel more confident about the visit now.

Penn

[T-lynn]

Dr.Keunzler is awesome,she's fantastic,very caring,compassionate neuro.

You'll be at building I beleive 91s if you're driving,have them park your car,if not you'll be a walking.

Be on time,they run a very tight ship.

When I seen DR kuenzler I had the initial appointment,test were scheduled a week later,mri,veps,ssep and a deep muscle EMG(never again) all on the same day.

I live 2.5 hours from the CC.

I had to go back for results.I follow up with here once a year now.

Be prepaired for blood test and urine test.I know she tested for every possible thing and levels.My blood test results are 4 pages long.

She's very thourough,a nurse practioner will take your medical history and then you'll see the DR.When you leave her office they will hand you a typed report of your visit that day.I was impressed by her and her staff.

At the clinic you are a patient not a number or pay check.

I think you will be happy with her.

[pennst8r]

Anyone who'se been to CCF seen Dr Kuenzler? That's who my appt is with in September.

I spoke w/ the medical concierge - no help given or offered. She said "I can't know what the doctor will want." I tried to explain I was just looking for general info - safer to book a hotel room, or do folks generally go to appt then home, and come back for tests? Need to know whether I just need that day off from work. I'll just call the doc office myself tomorrow. If that doesn't help, I guess I'll wing it and hope my employer is patient (they certainly have been so far, thank goodness).

Anyway, I digress for a change:) If anyone is familiar w/ her (Dr. K), I'd love some info. I read her little bio on the CCF website.  Thanks.

Fell down the stairs yesterday and am pretty darn sore, so excuse my grumpiness:(


Penn

[monotreme]

I have an appointment at the Cleveland Clinic Mellen Center for MS on August 30, so I can tell you about it afterward.  I live a plane ride away.  I called the Mellen Center and asked them the same questions about staying for tests etc and they said that they try to schedule the tests on the same week you are there or they will have you come back when there is a stretch of days they can fit everything in.  I am planning on going back since the next day starts Labor Day weekend and flying would be rough.

[juless]

Hey! I have an appointment at cleveland clinic mellan center on sept 26th as well!  ironic..been to the clinic many times for other issues...never for ms.  wondering myself what to expect?   all I was told via telephone was that I needed to bring all previous medical records and such..the "usual"

best of luck at your appointment! I have good faith in cleveland as they were able to do wonders for my mother where other hospitals pretty much wrote her off as dead.

Take Care!

[SUGAR~~]

Hi penn~ I go to the Clev. Clinic., regularly but, The best thing for you to do is to call the neuro's secretary and ask what to expect from your visit. I could tell you what the procedure was when I went but I do live in Ohio. So the procedure may be different in your case. I am guessing that they will want to do an MRI. They may do it on the same day considering your residence. On my initial visit, which was a long time ago, I had a thorough neurological examination and then he gave me ideas of what it may be and then sent for an MRI. Which was about a week later, I believe. Now when I go, I spend about an half an hour with the nurse practitioner and then I speak with the neuro. He is not the same neuro that I started with. He left the clinic. I am sure that they have a plan. They are usually pretty good there. There have been some minimal problems. But, they are eager to treat your symptoms to make you comfortable. I have not received a Dx. So they do the best they can , I guess??? Hopefully, this helps you. I see Dr. Bethoux. He is a very nice man. He cares alot about his patients. You can just tell by his demeanor. Let me know if I can help you. It is a very big campus. Best wishes for a good visit.

[pennst8r]

I printed off the concierge page. Sounds good to me.
My appt is on Sept 26 with neurology.

RNS is repetitive nerve stimulation - it was TORTURE! You do not want one for your b-day (unless you're a little kinkier than your image lets on - lol). They send the shocks (wish I could think of a stronger word for them) 7 at a time very quickly. Then you have to try to resist pressure with the muscle for one minute, do it again, rest 2 minutes and do it again. My neck was the absolute worst! When you start part of a test with a cloth over your face and someone holding down one side of your body, it's not a good sign:) The doc said I have a high pain threshold. I wonder of anyone's ever jumped out the window:-)  The testing took over 2 hours all together. I was bleeding fromt he needles, and so numb from the shocks, I went home to bed. Had planned to go back to work, silly me!

Well, better go to bed. Nite - thanks for listening!

By the way - how are you??? Glad to see you back!

Penn

[Quixotic1]

Oh, and what's an RNS?  Do I want one for my birthday?  Q

[Quixotic1]

Hi, there!  I've not been to the CC but I found this online.  Are these the people you are trying to contact.  They have a "Medical Concierge Service" that will apparently coordinate appointments, help with airline stuff and accomodations and in town transportation.  Just in case heres the link:

http://cms.clevelandclinic.org/body.cfm?id=141

Good luck.  Do you have any appts yet?

Quix