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Old 01-16-2009, 10:41 AM
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cyclelops cyclelops is offline
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Join Date: May 2007
Posts: 2,049
15 yr Member
cyclelops cyclelops is offline
Magnate
cyclelops's Avatar
 
Join Date: May 2007
Posts: 2,049
15 yr Member
Default 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.
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