[ItsWonderfulLife]

Hey everyone,
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

[bobthebuilder54]

Originally Posted by ItsWonderfulLife

Hey everyone,
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, yes I have just got back from a teaching hospital in Chicago, and am going back the end of this month. My neurolgosit wanted me to go to Mayo but my insurance would not pay for it, but they would pay for this famous teaching hosp. So on I go to the first Doc, well I was not to happy. I traveld five hours spent money on a hotel, and all the doctor did was look at my records, asked me if I liked my doctors, only looked at my nail beds, that was it. No checking my skin, or asking me if I had other issues nothing and then said the docs I have are treating me right, and took a bunch of blood for blood work as an after thought and then asked me when I was going to see the neurologist there. Well I did not even know I was referred to a neurologist also, so they dropped the ball with that too. They never set up an appointment with the other doctor so back I drive another 5 hours to a neurologist hopefuly I wont be so disapointed. I asked my primary if this is common the doctors just looking at the records and not you and she said it is. So I hope you have a better experience then I did. Of course I have had every test under the sun so maybe she really did not need to do more ( I have UCTD with features of scleroderma, lupus, I have a progressive muscle disease, neuropathy, raynauds, hypothryoid, photosenstive, bla, bla, bla. So have had tons of tests.
Have they done spinal taps, or eegs, or muscle or nerve biopsys on you?
They mentioned MS to me also and I did have a few leasons on my brain over the speech part of it. There is so much to complicate these tests.
Good luck, to you sorry I went on and on
susie