Cleveland Clinic NOT So Great - Ever Have This Happen?

[Erin0313]

Hi all!

Well most of you know that I just went to the Cleveland Clinic this week. I'll be brief on back ground. My neuro referred me to see a rheumy because every time I have an MS flair and she treats it something goes wrong with my auto-immune issues (hemolytic anemia, staph infection etc.)

My sister & I went to Cleveland and saw a rheumy & she also made me an appt at the MS Center since I was there. I was impressed ( a little overwhelmed) but felt good about going back next month. In the mean time I am working on my time line (yes I should have had it done years ago!) and collecting medical records that the MS center asked for (10 years worth if possible which it's not they have been destroyed).

Today I was sleeping after work when the I heard the phone. The caller ID said Cleveland Clinic so I answered and was impressed (only 3 days). The rheumy that I saw was on the line. She told me my blood work that she ran was back and was negative for Lupus, Sjogren's etc. She then said that she doesn't see any reason for me to come back and see her next month. I was so shocked I sat silent and she asked if I was returning to see the MS doctor again. When I told her yes, next month she said ok then I will pass my info on to her & hung up.

WOW! I already have a great neuro and the only reason I was in Cleveland was for a great rheumy. In all of my years I have never been dismissed like that. I think that the doctor who told me I might "just" need to see a shrink was nicer than this one!

I still plan to finish my long over due time line & collection of medical records & give them to the nice neuro at the MS clinic but I guess I am no better off then when I went to the "specialist".


Erin :)
.

[Erin0313]

Sue,

Well I like the hot potato comparison :). I am sorry that you had to go through that though. It is amazing how many of us have been the hot potato at some point.

I have heard great things about the CCF too. I know of someone with MS that goes there and he is doing fantastic. He isn't even on meds anymore I'm told. I thought that DMD's were the only way to slow progression. Maybe I should have someone call him up and ask him what meds he did take and who he saw. I wonder if that would be rude?

Did you ever get a dx after you left the CC? I hope that you now have a caring doctor that makes you feel comfortable with your treatment.

Take care & thanks for sharing

Hugs,
Erin :)

[Want to feel well!!!]

I will be happy to PM you and give you the name of the doctor.

Wanna :o)
  

[susieQ1960]

I went through the Cleveland Clinic assembly line of doctors in 2005-2006. I spent a year and a half keeping appointments with MS specialist and neurologists for headaches, seizures, and weak muscle issues. It took so long in between appointments and in the end there was no clear cut diagnosis. I felt like I was some kind of hot potato, getting passed around and passed around. Quite the waste of time and money.

In all fairness, I have heard good things about CCF when it comes to cancer patients.

Sue

[Erin0313]

Sunny,

   I guess that I am some what spoiled after all. Maybe that is why I was so shocked to be dismissed.

  You sounded shocked that the doctor actually called me herself instead of a nurse of secretary. Well that made me think & I realized that most of my current doctors do return my calls in person on a regular basis.

It didn't used to be that way when I was in limboland years ago but now when I call or go and see them they follow up personally most times.

I don't know if it is because I am from a little town and even the "big" town that I go to isn't big compared to Cleveland or if I just have really nice & involved doctors.

I don't want new doctors! The problem is I can't stay stable for even 1 month at a time and so "my" doctors are worried that they are missing something so they have referred me for more opinions.

Well only time will tell what the outcome will be. Lots of good has come of this - I have a time line and almost complete set of medical records now & I realize what great people my doctors are.

Thanks for your support

Hugs,
Erin :)

[Erin0313]

Hi! I am so glad to hear that you have found a doctor that has made a positive difference and has improved your life for you.

I would really like to know which rheumy that you see there. I have a feeling that once the ms doctor at CC gets all of my records they might want to see me again. I know that there are approx 6 or 7 rheumy's in that department. The head of the place is Dr. Hoffman and I am told that he is wonderful. I actually know someone who was in a coma and almost died of some rare disorder and it was Dr. Hoffman that saved him.

If you are not comfortable giving me the name of your rheumy, could you at least tell me if it is a he or she?

Thanks for your response and good luck & health to you :)

Erin

[Sunnytoday]

Erin, well that certianly sounds like quite the experience, but I too have to say that in her defense- she ACTUALLY called you. In all the many doctor's i've went to- I've never had a one personally call me. So, there was a good and a bad side to the "dragon lady" as you called her. :) Also, this got you to get all your records together and that's always important! Keep your chin up and it sounds like you have a good MS doctor so hang in there!

~Sunnytoday~

[Want to feel well!!!]

I am so sorry you feel as though you were cut lose too soon by the CC rheumy.  It might be a good idea to mention the past test results to her.  It helps if the doctor has more of the puzzle pieces.

In defense of the CC I have been seeing a rheumy at the CC for one year now and I have found my treatment to be nothing less than wonderful.  Thanks to my doctor there I have been given my life back.

If you don't want to contact the rheumy directly, at least mention the past test results to the MS spcialist and maybe he could pass that on to the rheumy.  Either way, it should be brought up.

Good luck to you...keep moving forward for some answers.

Wanna :o)
    

[Erin0313]

  Thanks for the support & feedback. I think that I was just so shocked because I haven't been dismissed by a doctor since the early years. I have enough positive everything and I no longer look healthy. That used to be hard when you looked good on the outside they would think sure how sick could she be. That is not a problem anymore.

Plus my neuro is the one that referred me because she is concerned that I am doing so poorly. I don't much like it myself but it's not like I just called and made an appt for myself attention seeking or something.

Here is the good and maybe fun news.

I am 80% done putting together the records for the nice doctor and a binder for myself. Wow what a project when you procrastinate! When I am through I will only need to get copies as they are done and will always be ready for any future questions etc.

While I was putting things together to send I came across a bunch of tests that the not so nice rheumy might wish she had looked at before cutting me loose. I have a positive ANA, positive Sjogren's test and some other special blood tests that were positive going back as many as 13 years.

Of course I included copies in with my neuro tests to send off on Monday. What do you think the odds are that the nice neuro makes mention of them to the dragon lady?

Does anyone think that she will change her mind and want me back after all? If she does would you go?

Thanks again for your support. I will keep you posted

Hugs,
Erin :)

[Fluffysmom]

That was pretty cold, but at least she did call you herself.

Hmm, I'm considering calling and cancelling my follow-up with my new rheumy, since all my test results came back negative except slightly elevated CRP and Sed rate.  Why waste the co-pay to hear what I don't have?  I could read the test results.

I suppose I do have questions for him, and I want a list of what he has cleared as things I don't have.

Do you have any symptoms of Sjogren's?  From my reading, since I had dry eyes and dry mouth, about 30 - 40% of people with Sjogren's test negative on the blood work.  My other tests backed up the negative, so I think I'm clear of the diagnosis, but just thought I'd throw that out there.

I'm glad you have a great neuro.

Take care,

Kathy

[MsWobbles]

I know how frustrated you must be feeling now.  You went to Cleveland Clinic, an acclaimed facility, expecting full consideration for your issues and some long-awaited answers.  Unfortunately, the truth is that even the top medical facilities can disappoint, as I found out at Mayo, and as others have experienced at other various top "name institutions."  It kind of leaves us groping - where to go for an answer if the best, most prestigious medical institutions fail us???  Have you tried Johns Hopkins?

I do respect that the Cleveland Clinic rheumy at least called you -  which is more than I got in my disappointing experience.  As Sllowe said, that rheumy saved your having to pay for another visit just to hear what she said over the phone (which is commendable and unusual, indeed).

I have found that the trend in American medicine today is to normalize results.  If something looks a little bit abnormal - they call it normal.  Maybe that saves on lawsuits.  I don't know why they do it, but I know it is done.  For instance, my take-home overnight pulse oximeter study from a hospital to assess for sleep apnea was called "slightly abnormal" by the physician who interpreted it, but my neurologist told me it was a "normal" study - that everything was fine.  Luckily, I read the original doctor's conclusion and insisted on a formal sleep study.   Needless to say, I am now on much-needed CPAP at night!!  

A friend, at high-risk for breast cancer recurrence, was told her biopsy was normal when really, there was cell atypia.  She had to pursue that one on her own to get answers. They had told her all was normal.

Always obtain copies of all reports and read them.  Especially when your doctor says that everything is "normal" you should be sure to check it out: It may not be normal.

[sllowe]

Erin, sounds like you were a victim of the assembly line.  But, it's great she called right away, and a follow up appt. for a more in-depth explanation might have sat better with you.

On the other hand, as I'm typing, I'm thinking this was a blessing in disguise.  You didn't have to go back to hear her say there is nothing else she is going to look into for you.

Guess this just wasn't the great rheumy you were looking for, durrint.  Back to the drawing board. Your great neuro will be just as puzzled I assume.

Interesting indeed.  Oh, be sure to call them back for 'her' report and the lab results.

[Lulu54]

Huh?  I'm so sorry to hear this happened to you.  At least she called and dumped you in person and didn't write you a "dear John"  letter :-)

I would bet that the nice neuro will have feedback for you from the rheumy and knows how to get ahold of her if need be........

Laura