Author Topic: Cleveland Clinic Visit  (Read 2982 times)

Wynter

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Cleveland Clinic Visit
« on: May 27, 2009, 01:30:30 PM »
As several of you know, last week I visited Cleveland Clinic. They reran all of my bloodwork and looked at past bloodwork and lip biopsy. The new bloodwork came back all normal, so the Cleveland doctor can't diagnose me. He said I don't need to take Plaqeniel because all of my tests are normal. He said I have a parasympathetic nerve problem and my glands have simply stopped working and they need to be restarted. I am not sure what that means. The only positive that came out of this is that the doc gave me a prescription for Doxepin because my sleep problems are pretty bad. I am not sure what the doc meant by getting my glands to restart. I already take Exoxac and that helps a little.

Epson

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Re: Cleveland Clinic Visit
« Reply #1 on: May 27, 2009, 04:23:42 PM »
Maybe he is on to something, at least he didn't shrug his shoulder and tell you, it's all in your head.

Scottietottie

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Re: Cleveland Clinic Visit
« Reply #2 on: May 27, 2009, 05:09:39 PM »
Hi Wynter

I'm sorry you didn't get the answers that you are looking for. If this doc can 'restart' your glands - and make you feel better - it would be a plus. maybe he'd come to some kind of dx if he finds they won't 'restart'.

Sheeesh - when Sjogren identified the syndrome they didn't have blood tests or lip biopsies. He went by symptoms.

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Wynter

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Re: Cleveland Clinic Visit
« Reply #3 on: May 28, 2009, 10:27:31 AM »
You are both correct. I meant to ask him on the phone how one plans to restart the glands. If he means to take Evoxac, already doing that. I know people that are under alot of stress can have weird stuff happen and maybe that's what has happened to me. I have never handled stress normally. I once knew a girl that went through a divorce and her father died at the same time. She was under so much stress, most of her joints swelled up and she was in a wheelchair for a year and on RA drugs. After about a year, everything subsided, and she has never had a problem since. Maybe that is my problem, especially since I have absolutely normal bloodwork. Thanks for your encouragement. I know alot of you are in a worse situation than me by having to be on those immunsuprressant drugs.

maestro

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Re: Cleveland Clinic Visit
« Reply #4 on: May 29, 2009, 05:27:51 AM »
Wynter, I just saw your post on the other thread.  My wife did finally find a great Dr in South Bend.  Within a week we were on a different course of treatment; and more importantly, I felt like we were being treated as people, not a disease.

Our whole process is still painful and maddening for me to think about.  The most important thing that we got from the process, aside from a diagnosis that fit, was the knowledge to find a doctor who will listen. 

I really wish you the best.  I would be happy to go into more detail, if you would like, just PM me.

Wynter

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Re: Cleveland Clinic Visit
« Reply #5 on: May 29, 2009, 03:59:27 PM »
Hi Maestro,

I would love for you to go into more detail. What were your wife's symptoms and how has she improved?

irish

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Re: Cleveland Clinic Visit
« Reply #6 on: May 29, 2009, 11:04:02 PM »
What is with these docs???? Apparantly he missed the class on autoimmune diseases where they talked about seronegative autoimmune disease. This would be sjogrens with negative blood work. I think I would lay in the bushes and rest for a few weeks and then go out and look for another doc.

It took me 8 years to get diagnosed and I had symptoms for 40 years. Was I sick and tired of being sick and tired? YES! Was I sick and tired of being told it is all in my head? YES!! Was I brokened hearted when on the way home from an ER visit my hubby told me that he "guess you will just have to live with it til you die". This was another trip when I was having touble breathing and told it was all in my head.

The last 8 years were "h e double toothpicks" but I was bound and determined to get a diagnosis cause I was not going to die without one. Like I had control of that!!! ::) Just hang in there and persevere cause that is all you can do. The one thing I will tell you is to refuse all the repeat blood work and cat scans that you feel are not necessary or too close to the last time. My insurance company and I paid for a heck of a lot of stuff I wish I never had done. Good luck. Irish ;D

eyeamdry

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Re: Cleveland Clinic Visit
« Reply #7 on: May 29, 2009, 11:16:13 PM »
Maestro- if you've found a good rheumy (or other doc) in South Bend, maybe you'll print his name for us.  Is always good to have the names of good docs.  I go about 75 mi to my rheumy, which is worth it.  So bend is about the same or less distance for me--in case my doc ever retires.  Lucy :o

Patze

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Re: Cleveland Clinic Visit
« Reply #8 on: May 30, 2009, 06:20:59 AM »
Hi Maestro,

I'm glad to see that your wife is getting care and I'm sad that I'm not in your part of the country, I'd love to be able to talk to a rheumy - not just get grunts.  Oh well, he's treating my symptoms even though I'm sero negative, and that's a good thing.  Now to find a dictionary that translates grunts. ;) :D


Patze


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maestro

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Re: Cleveland Clinic Visit
« Reply #9 on: June 01, 2009, 04:52:30 AM »
Well, since so many have requested our doctors name is Dr. Natali Balog.  She is avery intelliegent and caring lady.

My wife seems to be in a bit a flare right now, her hands are a bit sore and stiff.  Her eyes have been drier (not terrible, though) as well.  We have an appointment with Dr. Balog tomorrow about these issues and the possibility of APS.  That one is a bit scary as we are a young couple looking to have more kids...

Time will tell what our course is.  And in the words of my father, "It is what it is."

ohiolady

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Re: Cleveland Clinic Visit
« Reply #10 on: June 01, 2009, 08:38:42 AM »
Wynter,

Please keep us posted, I have completely normal bloodwork, as well.  The only thing that shows is antibodies for Hashimotos Thyroiditis.  My physician, at Cleveland Clinic, diagnosed my Sjogrens as secondary.  Boy, I wish they could restart my glands.

Thanks for sharing.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

allium

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Re: Cleveland Clinic Visit
« Reply #11 on: June 01, 2009, 10:56:56 AM »
Hi Wynter:

Such a disappointment.    I was hoping that this would work out for you, and it would be a direction that others with sero neg conditions could go for answers (like myself). 

I seem to remember you have neuro symptoms as well.  If this doctor thinks you have a nerve problem, perhaps he should be trying to enlist the help of neurologists at the Clinic to confer or refer you to on this.   

Not sure where they are getting this neg=fibro stuff.  Can't be teaching this in schools yet, but it seems highly pervasive. 

Keep slogging away; I am still trying (wearing out).
Sheila

Wynter

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Re: Cleveland Clinic Visit
« Reply #12 on: June 01, 2009, 11:24:45 AM »
The only place I can think of going is Philadelphia to Dr. Vivino. I am not sure if I can get an answer there either, but at least I would have exhausted my efforts. I don't know what restarting my glands means. If it means giving Evoxac, already using it. Sometimes stuff caused by stress goes away after awhile, but after a year, I don't think it's going away. I am very frustrated, especially since this is effecting my job. I am not sure how much longer I can work because of my eyes.