Author Topic: Cleveland Clinic Visit - INTERESTING!  (Read 3576 times)

Wynter

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Cleveland Clinic Visit - INTERESTING!
« on: May 19, 2009, 01:52:06 PM »
Hello All,

I had my initial visit with one of the rheumies at Cleveland Clinic (downtown) this morning. It's very interesting what he's had to say. Overall, I am disappointed, but he hasn't yet completed his evaluation. The doctor is very knowledgeable and has written several articles about Sjogren's. If you have any comments on my information, I would appreciate it!

First, I completed a lengthy generic questionaire, then I was taken to the examination room. The doc asked me lot's of the same questions that were on the questionaire. Most of the questions were  about pain, activity, fatique/sleeping  issues and family history. After the interview, he had me fill out several questionaires about activity, depression/axiety, pain, etc. Next, he performed the physical exam. Overall,  I feel  his exam was  very thorough and he asked alot of questions that the  local doctors wouldn't or I couldn't get them to listen.

 The Cleveland Clinic's doc approach was "let's look at the overall problem and not symptom by smptom".  While a I agree with this, I feel both separate symptoms and the overall picture need to be evaluated by putting together the individual  symptoms and coming up with the big picture. I  know the doc's approach would be different should I have positive blood  work,  positive biopsy, or swollen glands. Unfortantely, I don't have any, although the doctor did redo my bloodwork.  I attempted to explain several of my symptoms, as I have kept a symptom diary. But the doc wouldn't  listen to me. I even tried to mention that my parotid glands don't swell,  but they get soar,  and he said not related to Sjogren's.

As of now, the Cleveland doc thinks I only have  some sort  of sympathetic nerve (autonomic nerve) problem and not
Sjogren's, especially for not having positive tests or swollen glands. I've had the dry eyes/mouth for about 5 years and in 2008 the "autonomic" issues started developing like heat intolerance, weird sweating, increased hearing noise sensativity, nose/smell sensativity.HELLO, automonic problems can be caused by autoimmune disease.

Sorry, to be so  long, but the doc has ordered a sleep study, which I deperately need.  So I am staying another night at the Cleveland  Clinic to do a sleep study. We'll see. If I don't get answers at Cleveland, I guess I need  to go to Dr. Vivino or Birnbaum. Thanks for listening to my frustration.





Scottietottie

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #1 on: May 19, 2009, 02:01:26 PM »
Hi Wynter

I understand your frustration. I was written off as a hypochondriac for years until my thyroid swelled up visibly. (At least the docs are acknowledging there is something wrong with you!)  Other dxs followed a Hashimoto's one.

My glands are not swollen. My rheumy says he doesn't think they will swell because my Ro/La is negative. He still gave me a dx of Sjogren's based on symptoms and a schirmer test and the fact that my mouth is a disaster area toothwise. Plaquenil helped. It wouldn't help if it was 'all in my head'.

I agree they need to look at symptoms and make a 'whole picture'. I get really annoyed with different specialists dealing with their own speciality and never seeing the wider picture.

My rheumy doesn't think that esophagitis and IBS are related to SjS. I KNOW from what I've read in here, that they are. i can't be bothered to argue with him though. I just make sure they are kept under control as much as I can.

It strikes me that the doctors who see the whole picture are pretty special and few and far between.

I hope once all your questionnaires are correlated and test results back that you get some answers. Keep us posted.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
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Butterfly

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #2 on: May 19, 2009, 02:03:15 PM »
Hi Wynter. I'm so sorry that your visit to the Cleveland Clinic isn't going well. It is extremely frustrating trying to find that right doctor that can help us. I went to the Mayo Clinic earlier this year and came back not knowing anymore than when I left. I am still trying to find a doctor that has the knowledge or desire to learn about my issues. I wish you the best of luck! Don't give up. You'll eventually find a doctor that can help you.

Wynter

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #3 on: May 19, 2009, 02:12:43 PM »
I so hope my blood work comes back positive or elevated.  I know that's crazy! I so wish I could get a hold of a 6 month supply of plaqeniel to  see if it would help me. If anyone has any extra, you can send  it to me. LOL!  I do need  the sleep study because I have always had sleep problems and it runs in my family.

I find it odd that the Cleveland Clinic rheumy thinks I have just an autonomic disorder. He actually said it can be treated and it might go away! IT'S BEEN ONE WHOLE YEAR since the neuro symptoms became visible. I think the Cleveland doc is just giving this info because he doesn't know what's  wrong.

Oh,  yeah, I didn't  mentioned that he gave me brochures for fibromylagia!

lesmom

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #4 on: May 19, 2009, 02:19:11 PM »
Hi, Wynter
Glad to hear that you got your 1st visit out of the way, but sorry to hear how disappointing it was. I am still awaiting my 1st appointment with a rheumy (July 29th and I had it schedule form the beginning of March.) My GP is starting to get on board with the SJS dx that my opthamologist made based on my symptoms and already having Raynuads. He's still wondering though because the blood work the neurologist did last year all came back neg. I am really wondering why so many doctors believe that the bloodwork HAS TO BE pos. before they will agree that's the problem. Especially when such a high number of people are seroneg with SJS. To me it really seems like it doesn't need to be that hard, but in the real world it is very hard. The medical community has minimal individuals that truly want to help no matter the person or the symptom or the disease. it's so unfortunate that they are so few and far between. I just have my fingers crossed that I luck out with the Rheumy I get to see. The neuro was a huge flop and really doesn't care. At least this rheumy is associated with the other large hospital and not the one that the neuro is. As far as the nerve thing, I truly believe that SJS and the Raynauds is causing mine, otherwise why were the doctors concerned I had MS last year. The MRIs came back neg. So I know there has got to be an association with that and the autoimmune issues.
Hang in there and please keep us posted as to what your results end up.
Leslie
By the way,
What type of biopsy did you have done today?
hugs to you

Wynter

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #5 on: May 19, 2009, 03:02:07 PM »
I didn't have a lip biopsy. I had it last year and it was negative. Won't have another one.

irish

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #6 on: May 19, 2009, 10:01:00 PM »
Wynter, Sorry that you are having issues with your doc but glad that he is doing the sleep study. Hope that you blood work does come out positive so you can say"I told you so".. Also, don't poo-poo the fibromyalgia issue just yet. There is a long article in the Sjogrens Foundation magazine called The Moisture Seeker. The current issue of the mag tells that a very large percentage of sjogrens patients have fibro. Also, it seems that fibro is genetic as is sjogrens(that is what it said) and that many autoimmune diseases have tag-a-long fibro. Fibro in itself is a miserable disease. Good luck. IRish ;D

P.S. Doesn't Cleveland Clinic have a sjogrens department???

Wynter

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #7 on: May 21, 2009, 06:44:06 AM »
No Cleveland Clinic doesn't have a Sjogren's clinic. I debated about going to John's Hopkins or Dr. Vivino in Phili. Dr. Vivino was my first choice, but it was going to take 6 months to get in. I believe that Dr. Birnbaum from Hopkin's mentioned they just started a Sjogren's clinic. I would really like to go to Dr. Vivino because they evaluate the dental, eyes, and rheamatogogical for the patients. Cleveland Clinic didn't do that, but they did rerun my bloodwork.

The sleep study was a disaster. I knew it wouldn't work because I don't function well when I am outside my environment. They hook a bunch of wires and monitors to your whole body and you feel like you can't move. Oh well, they probably saw me at my worst.

I think the Cleveland doctor will diagnose me with fibro. It's seems that's what they diagnose people with negative blood work with. I explained to the doctor that my mouth and eyes were extremely dry and have gotten worse. I have read on here where the plaqeniel sometimes helps those with dry ness, but not always. The doctor said one shouldn't take plaqeniel unless they have positive blood work.

This whole thing confuses me. But I will see what the doc has to say after my tests.

mom2kaipo

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #8 on: May 21, 2009, 09:37:28 AM »
hi wynter, and welcome to SW!

i actually came upon your post in a search for "heat intolerance" -- so i have to ask you, Have they checked your thyroid? 

and, someone correct me if i'm wrong, but one can have secondary sjogren's without positive bloodwork if they have another autoimmune disorder and Sjogren's symptoms, can't they? 

sometimes problems are overlapping and it takes a lot of testing to find the actual root cause.  please try not to be discouraged. 

like scottie, for many years my autoimmune diseases were undiagnosed and i was written off as hypertensive and anxiety prone.  (LOL)  it took me two years, a new PCP and nine specialists to get my 3-page list of complaints dx'd and/or fixed.  and, surprise !!!  it wasn't all in my head! 

you know your own body, and you know when it's not right.  keep doing what you have to do to get better. 

SW is a life-saver.  (i recommended this site to my rheumy, btw)  ;D

keep us posted how things are going for you.  you, too, penquin.  welcome!!

Wynter

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #9 on: May 21, 2009, 10:08:47 AM »
Yes, my thyroid has been tested several times. Last time was February. They might have even retested at Cleveland Clinic. I can live with not having a definitive diagnosis. But I sure would like to try Plaqeniel just to see if it would help me. The Cleveland Clinic doc said it should not be taken with people that don't have an elevated inflammation rate (I THINK THAT IS SED OR ESR). My rates have all been normal. My biggest problem is my eyes and it's starting to effect my job, as I work at a computer all day. I don't think I can get disability for just dry eyes.

dbaratta

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #10 on: May 21, 2009, 10:26:17 AM »
Hi Wynter:  I too had to make some decisions about where to get good care -- I was being bullied by an egotistical rheumy.  Found Dr. Vivino's name on the Sjogran's website with info about the SJS clinic in Philly.  I live near the Jersey shore.  I made an appt. w/Dr. Vivino--took actually 6 mos. to get in but was worth the trip.  He has been following me now for about a year and I think he's just AWESOME!  I've developed alot of neuropathies, radiculopathies per EMG/nerve conduction, and now very bad autonomic problems -- FREEZING--wear 3-4 layers of clothing in winter, fall and spring and --BOILING HOT -- in the summer -- can't stand to even go out in my yard or to the beach -- or anything really.  I got heat stroke in DC last year.  I don't sweat except in my hair and in the middle of my back.  Haven't for about 2 years. Dr. Vivino is very caring, compassionate and looks at the big picture and also the little one.  I am sero negative, elevated ANA, positive lip biopsy, positive scintography (radiological test for saliva), positive severe dry eye and positive bone spurs and bulged disk in cervical spine and lumbar spine -- numbness, weakness, pain down entire nerve roots, now terrible headaches.  This last appt. Dr. Vivino said I needed to see a Neuro that knows about Sjogren's and I suggested Dr. Birnbaum at Johns Hopkins.  He thought it was a good idea and gave me the referral.  Only problem is they made an appt. for me at the end of Sept. with a note that Dr. Birnbaum would do everything possible to see me sooner if they could.  Oh well.  Better to wait awhile and see a knowledgeable doc than someone that "isn't really interested" which usually happens to those of us thought to be neurotic especially with negative blood, etc.  Just hang in there -- you'll get to the right person--I did.  Go see Dr. Vivino if you can -- I'm crazy about him.  Best of luck.  Diane
Primary Sjogren's, RA, Raynaud's, Hashimoto's

maestro

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #11 on: May 26, 2009, 11:02:18 AM »
Wynter, my wife went to Cleveland Clinic last September and saw one of their rheumys. 

All I have to say is: Run from them.  Do not listen to them.  Find someone who is acutally competent.

Wynter

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Re: Cleveland Clinic Visit - INTERESTING!
« Reply #12 on: May 26, 2009, 12:05:47 PM »
Did she find anyone else to help her? The doc at Cleveland told me I have a parasympathetic nerve system and gave me some pamphlets on fibromylagia.