Cleveland Clinic Referall

[Wynter]

Hi All,

I am getting ready to schedule an appointment with my primary care for a referral to the Cleveland Clinic Sjogren's Center. If anyone knows the name of a good doc up there, I would appreciate. The rheumy's where I live have pretty much blown me off, since my blood work is normal and lip biopsy is also normal.

My question is it's been since April that I was tested for all the athritic diseases, thryroid, diabetes, and probably other stuff that I don't know about. I want my primary care to do a battery of tests before I go the Cleveland so I will be fully prepared. Below is a list of tests that I can think of. If anyone has additional suggestions about tests please let me know. I want to be tested out the whazoo. I know there is a possibility it could all be "normal", but at least I will know.


Vitamin Deficiencies
Diabetes
Thryroid
Hormonal Tests

Thanks!

[Scottietottie]

Hi Wynter 

I'm going to leave this for someone else to field but it sounds like a good idea to have all the tests first.

What I would also suggest, is either to keep a symptoms diary, or at least list your symptoms before you go. It amazingly easy to forget one on the day! I also suggest that you actually write questions you have down before you go and then you can't forget to ask something you want to!

Good luck!

Take care - Scottie 

[eyeamdry]

Wynter, why do you want to have all of the tests run now that you are able to get to Cleveland Clinic?  Now that you have a chance to go to a top notch place, why all of a sudden run and get tested?  Oprah even went to Cleveland Clinic for all her thyroid problems.  Talk about high classed.   

If your doc "does a battery of tests" before you go to the Clinic, your insurance may not cover things that are run too often.  If they see a batch of tests ran for Disease A and then the same tests ran not too long after, they may have questions.  It's called cost/quality control. 

The tests that will be run at the Cleveland Clinic will be the ones that are important.  I'm just not sure why you want to be tested up the whazoo before you go to the Clinic.  I think you'll be at a first classed place.  What Scottie said about a diary makes sense.  Best of luck.  Lucy

[ruby52]

I went to Cleve. Clinic for a 2nd opinion for back and leg pain.It was a Neurosurgeon and when he couldn't find reasons for all my problems he referred me to a Neurologist up there that he gives all of his difficult and puzzling cases to figure out.His name is Dr. Tsao.It took some pushing on my part to get him to keep working on a complete answer,they tend to stop looking once one thing shows as a Dx.Sensory neuropathy was mine and I had to call back and say I wanted to keep looking something else was wrong.He stumbled across Sjogren's after more questioning of symptoms.He ordered a lip biopsy and Bingo.I'ld had symptoms for a long time that I explained away.He did all my bloodwork right from the lab downstairs .It seems Drs. always want their own certain bloodworkups so you might want to save yourself another trip to another lab and let whoever you choose order them.He sent me to a Rheumy there at the Clinic to see what else she thought might be possible.After a physical she came up with Fibromyalgia and made another appt. to see her.I went to a local Dr. after that.The Rhuemy up there wasn't his first choice he just wanted someone to see me quickly and got me into  this Dr.She was ok but she wasn't rated well on a site I 've seen so unless you want I won't mention the name.

[allium]

Hi Wynter:

I'm sorry that I can't help you with a suggestion for tests or a doctor at the Cleveland Clinic, but I wanted to say that I am starting to believe as well that this might be the only possible way that I'll get any help.  Like you, I am being completely discounted by most of the docs I've seen, because my blood tests don't show any positive AI results, and my MRI's are not suggestive of MS.

The current one who is supposedly a neuro-opthamologist/MS specialist, told me that I might have "post traumatic stress syndrome", compulsive tendencies (made a list of my symptoms to help my muddled brain remember) and "too many symptoms" to have something real.  This is with a shrimer's test of 5 and 7, white matter lesions on my brain shown on MRI, and obvious facial palsy on the left side.  Progressive optic disc cupping and pallor.  Along with cervical OS, disk degeneration and herniation/spinal compression showing on films too.  A CRP of 10, and an ANA of 1/:80.

Of course, telling them I have facial numbness, loss of taste and hearing, muscle twitching, severe dry mouth at night, massive pain in my hips, back, and eye, and motor dysfunction is just something else that they can disbelieve too.

I guess I'm trying to say I understand, even though you have more classic SjS symptoms than me.  I would be interested (and maybe others would be too) if you could post again about how this process works; the referral (or self referral), how the appointment is set up, or any other info that you can give.  I think it's likely for me that I will have to have a general workup to narrow it down to the specifics, as it's still unclear what is going on with my body.

I'm trying to work up the courage to call the CC today, just to ask questions.  I've just been battered around so much lately....a little afraid.

However, the Clinic has an excellent reputation.  It think it is in everyone's best interest that they treat you seriously right off the bat, rather than you having to prove to them that's there's something wrong with you.

Even if you're not Oprah.  

Wishing you much luck with this.
Sheila

[gurs]

I went there around 4 years ago and saw a good Rheumy named
Scheetz...older doc, seemed to know alot about autoimmune. He worked with my doctor
here in Michigan to come up with a treatment plan. Would def go see him again!!!

Good Luck!

Gurs

[lynnmarie219]

Hi Wynter!

I don't have any suggestions for docs at the CC, but I do want to wish you good luck in your appt up  there. I hope you get some answers and a treatment plan to help you !

Let us know how it goes!

[irish]

The gals are right about holding off on the blood work. The Cleveland Clinic has a good reputation and when you go there they will want to do their own blood work. Reason being---not all labs are created equal and if they do their own blood work and have it done in their own labs of choice they feel more comfortable about the lab results.

I am a RN(an old one at that) and I know this to be true. Also, if you go to the Mayo clinic and have had blood work done on a Thursday and see them the next MOnday they will do the same blood work over again. This goes for Cat scans, etc.

Just go and let them do what they have to do. Also, writing down all your symptoms is a good idea. I don't know about you, but I can't keep track of my symptoms and when something quits bothering me I tend to totally forget about it because something else will be picking at me. Having all these owies is really the pits because it does sound like we are making it up. However, I always wonder who in the world would be well and think it was fun to have so many health issues. I always tell doctors I have more important things to do than sit and dream up health issues. There is a world out there!!! Good luck. Irish