I keep seeing John Hopkin's pop up. But, without hearing from someone who has actually been there, I wonder what the actual benefits would be? Would it really be worth the time to spend 3 days in Maryland? Could the treatment regimen be that different? I am anti-SSB positive, so I wouldn't be going for the main purpose of receive a firm diagnosis.
My other thought is that by going there, each additional person who has SS has their history/symptoms/complications, etc., added to the info they collect would be beneficial to Sjogren's research/treatment as a whole.
Like Joe said were all different,, some people get off pretty easy,, if easy is dry eyes and dry mouth,, ut to that person its horrible,, but tehre are some of us like Joe said,, make it hard to pinpoint something when we have so many areas involved and a doctor cant piece different things together, if it were stomach pain,,, they can zero in,, when we start to complain about burning skin,, trouble walking,, abdominal pain,, dry mouth dry eyes,, there is no way in heck there going ot look at us sanely,
These autoimmune things are insidious, you go to the doctor,, he runs some basic labs,, you are normal, and we get sent on our way home,, feeling good that out liver is working ok,, but why do we feel so bad,, why does the sun hurt,, why does our skin burn,, we go back to the doctor, tell him whats going onnow,, and now we get alook like,, oh boy,, heres s hypochondriac,, if were lucky we get sent to a neuro,, if not a referral to a psych,, now we begin to question our saniety,, or hear,, oh you have fibro,, meanwhile your nervous system is being assulted beyond repair,
Now,, if you go to a place that sees and treats jogrens,, its very likey they have seen alll these symptoms and kmowwhere your coming from,, you can get proper testing,, EMG, MRI,,Nerve biopsy,, then you begin to be treated correctly,,, I dont think the damage is completely reversal, but it may make life more managable,, I never got that chance,, my rheummy told me I fell thrugh the cracks of the medical community,, I had nervous system problems that EMG studies didnt show,, it was small fiber neuropathy,, which has gone body wide with some motor involvement,, I have doctor notes at home here stating that the patient in his opinion has a somotoform disorder,, a psych disorder,, so then I was deemed,, in one word,, NUTS,, so nothing was done for along long time until a biopsy proved something was going on,, thats why I think if I had the resources,, I would go top notch,, you can bet the williams girl is getting alot better treatment then the average person is,, what rheummy or neuro would not love to say he or her treated Venus williams,, of course this is my own opinion on this,, take it for all its worth