[ItsWonderfulLife]

Hey everyone,
I posted this same thing in an autoimmune thread but hoping to maybe get some feedback here also I have been to numerous doctors/neurologist/rhemotologists etc. and havent been able to find out whats going on with me. Im 26 and have symptoms that are similar to MS but MRI was clean and all other basic neuro tests didnt point that direction so my neurologist has refered me to Standford Hospital. (I live in California). I was wondering if anyone has ever been refered to an educational hospital and could help me as to what to expect with their testing etc. Thanks in advance

[nemsmom]

Originally Posted by ItsWonderfulLife

Hey everyone,
I posted this same thing in an autoimmune thread but hoping to maybe get some feedback here also I have been to numerous doctors/neurologist/rhemotologists etc. and havent been able to find out whats going on with me. Im 26 and have symptoms that are similar to MS but MRI was clean and all other basic neuro tests didnt point that direction so my neurologist has refered me to Standford Hospital. (I live in California). I was wondering if anyone has ever been refered to an educational hospital and could help me as to what to expect with their testing etc. Thanks in advance

Hi there,

I'm also 26. My MS was fairly easy to diagnose, but I have other issues that weren't. I was referred to OHSU for testing to try and figure out what was going on. I had about a year worth of test after test to try and figure out what's going on with me. Most of them were very caring.

It depends what department you're referred to and what they're looking for to figure out what tests they will do. I had a LONG list of tests they did on me.

I hope they are able to help you not only discover what is causing you the issues but treat them as well.

Good luck
Kristie

[whoopdedeaux]

Hi, Wonderful Life. I'm sorry you're going through all this.

Like Kristie said, I don't think anyone here can begin to guess the type or scope of tests you'll go though. As each series of tests is complete, the results will dictate the direction the testing will take next and you're likely to go off on several tangents before you're done.

Many of us with MS understand how unsettling it is to spend a lengthy period of time just "not knowing", and it must be very frustrating for you. I think the referral to a teaching hospital is an exciting opportunity to get a whole team working on your behalf, and I sure hope that they make good progress in pinning down the problem so you can find the right treatment.

Good luck and keep us posted!

Anne

[msarkie]

I haven't had much experience with teaching hospitals, but I have seen several teaching drs in clinic and been seen in the medical school's clinic. I was always pleased with the quality of care. Since they are teaching the younger drs, they tend to explore more options and go further than a dr in his own clinic would. Good luck!

[Catch]

Many years ago when I was dx'd with RSD, I was sent to the Milwaukee teaching hospital. It was a frightening experience for a 16 year old, but they got the dx right and I felt I was in good, if not gentle, hands.

For my dx of MS I went through the UCLA system.

I am also having trouble with depression and cannot find a psychiatrist in my area taking new patients, so my neuro is going to try to get me into their psychiatric teaching school as a patient. Even if I only see an intern, it will be supervised by a PhD.

I guess teaching hospitals have always done me well.

Good luck to you!

[Judy2]

Hi WL! My experience with a teaching hospital was back in the dark ages -- 1976 -- before being diagnosed with MS. Having blind spots in my eye, my doctor referred me to the Wills Eye Hospital in Philadelphia. In hindsight, it was the first episode of optic neuritis with more to come. Anyway, I found everyone to be very interested, caring and kind. Of course there were LOTS of tests, some quite unpleasant, and quite a few interns/residents peering into my eyes as apparently it wasn't seen too often.

They did get the diagnosis correct and I've often wished I could have gone to a teaching hospital with this lousy MS. All the best at your appointment and please let us know how things went.

[booklass]

" I was wondering if anyone has ever been referred to an educational hospital and could help me as to what to expect with their testing etc."
Well, I have been to a couple, few, teaching hospitals in our military, gypsy life. What I experienced was that it is a very "social" experience. There were often several doctors at a time examining you. That can be a bit disconcerting if you are shy, but it does have its pluses. There are more heads coming up with more ideas. One drawback, depending on where some of your doctors are in their residency, is that some doctors will try to make you fit the diagnosis they have in mind. Especially if you are a puzzling case. Your job is to be very honest about your symptoms, and stick to it. Type up your medical history before you go, and make a few extra copies. Keep one on you so you can refer to it. You will fill out a lot of paperwork. Answer a LOT of questions. Notes help. Keep your explanations short and to the point. I found that the wordier I got, the more likely an intern or doctor was to put in extra information that may not be as accurate into my notes. Think in "bullet form" but, of course, be thorough. I tend to go down other bunny trails sometimes.
I met a lot of mostly nice doctors at the hospitals. I hope your experience is very positive.
Also, I have an autoimmune disease, and I am going through the process now of finding out what is causing my new (and not welcome) case of trigeminal neuralgia. It took years for my autoimmune disease to be officially diagnosed, though, and that is not uncommon with autoimmune diseases of any kind. Several other autoimmune diseases mimic MS, including Sjogren's Syndrome. Because, after all, we couldn't have this be easy, could we? Best of luck. So hang in there, and don't give up pursuing a diagnosis if you know something is wrong. The inability to find an answer does NOT mean the problem does not exist. These things take time.