Sjogren's Hopkins
 

If any one is pondering going to the Hopkins SJOGREN'S clinic, contact me prior to going.

I know Hopkins is fabulous. I can not tell you my experience at the Sjogren's clinic was good. No blood tests, no any tests, my medical records that took months to get to them, scattered all over the exam room and shoved back in my face when I left. The line, 'I have other patients waiting' repeated over and over. I was taken in a half hour late and was to have an hour and a half consult. I got a cursory neuro exam, which was stupid, as I brought reams of neuro tests, most of them abnormal.

After I got home, I got 3 phone calls, unsollicited, 'Well, what did you expect?" I told him. He seemed utterly lost at what I was speaking about.

My old pathology slide left there languishing on the shelf, last night, at 8:30pm I get a call, that they could not read it as they did not have the original report. Well, of course not, it was shoved back in my face. I had to generate the call as to where my pathology slide may be.

None of my docs here got a report. My neuro is published on Sjogren's, so he was excited at the thought of working with Hopkins, too bad we got a doctor that on the Sjogren's forum passes himself off as an expert. I could have saved the plane fare, hubby the vacations days, not to mention hotels, transportation etc.

If you have Sjogren's and you think you have neuropathy, get a skin biopsy. Save your hard earned cash.

I already new I had neuropathy, we wanted to know why my slide was always looked at as 'atypical'. We expected to find out some cell counts. I was hoping for a video capillaroscopy on my nail.

Now, please don't take this as a slam on Hopkins, they are fabulous and deserve the reputation, the guy I saw, does not deserve his job with Hopkins. There is a difference.

I wish it was as easy as asking for my money back! Their people acted quickly regarding my concerns and I am sure that it hit the fan, but no sick person should have to endure this kind of treatment. I am thankful that they acted quickly to find my slide, but, I can't go back, nor would I ever go back to see this physician.

Sounds like you got the 'lemon'?
 

As Nide44 always says: someone's got to be in the lower half of the class!

But, that is all so dissapointing AND expensive! IN hope, effort and costs.
I do believe you are entitled to a: :hissyfit:! at the very least.

I truly wish it'd been different and YOU hadn't gotten the short stick on the 'lottery' so to speak!

:hug::hug::hug:'s and stay warm, please! - j

Cra*!!
 

I am so sorry! I was so hoping you would be able to find out something. I felt that when he (doctor) posted on the Sjogren's forum that he would really help someone. But I'm wondering if after seeing a whole boatload of people..he realized he had more than he bargained for with no real answers. After all these years with Neurological Sjogren's I still don't have a real way to stop it. It is at this point (in time)unstoppable. With the methotrexate, I slowed mine down and that is all. It is once again progressing. The eyes are no longer responding to Restasis.

I don't know how he could if he really was an expert, resist your case. You have so many classic symptoms as well as a biopsy that could be compared to a new one. What a disappointment he was.

Thanks for being brave enough to post this.

Billye

Thanks guys, I have to say, that I kept my expectations pretty low prior to going there.

I do have to say, the people of Baltimore were wonderful to us. :hug:

Billye, on the Restasis, it isn't working for me either.

Plus, recently, I had some kind of treatment like iontopheresis for my rotator cuff tear and now I have what is likely an atopic dermatitis or psoriais. The OT says she thinks given my nail has these issues, that it is psoriatic. The patches look just like psoriasis and are not going away. It has been two weeks now with red, scaley patches from one application.

I agree that this doc felt he would be seeing people with Sjogren's who needed to be told they have neuropathy, not people who already know they have neuropathy due to Sjogren's with multiple complications.

I was hoping to have my pathology slide looked at and that was the worst disappointment, and the fact that they just let it sit there, and did not contact me for the initial report. Not to mention, I had it shoved back in my face when I said 'I think you need this'. I just had them send the slide home.

My physician is published on Sjogren's Neuropathy and is having a hard time with getting local Rheumatologists to admit it can result in Neuropathy.

I do believe IVIG has helped, but proving it is another matter. I don't know how long I will have it.

Bummer that the Restasis only works so long. Perhaps it is the winter and the heating, and dryness, but even with a cool mist going, they are dry or get stuck together. Ahh foo on all this.