Re: Re: Hi Ho, Hi Ho it's back to the doctor I go

[Guest guest]

Deb,

I have no good news. The majority of Sjogren's specialists are located on the east coast where the original studies and disease diagnosed. The Sjogren Association was originally located in Long Island, NY. Then, they moved to NYC.

I live in So Ca and only found doctors that specialize in fibro and arthritis.

A lot of people complain they feel worse while taking antiboitics. Antibotics affect me the opposite way. I feel good while taking them and awful when I finish.

I have neuropathy, which comes and goes. I can feel okay for a while and be unable to move the next. Auto immune patients told me this is normal.

Nan

Judy,

I have been away on vacation and then life just has gotten busy. Getting caught up on the posts. i was wondering how you went about finding the immuno rheumatologist. I have a rhematologist but she doesn't specialize in Sjogren's and has recommended that i find one that does. I live in No. California in the east bay of the San Francisco area. I have hypo thyroid, LS and now since Feb. Sjogren's. I learned about all of these in the last 14 months. I went to the clinic in SF to get tested for the Sjogren's in a study. They don't treat you they are just doing a study. They told me that my symptoms would not get worse for at least 10 years as Sjogrens is a slow progressing diesease. However after feeling ok, I had to go on antibiotics for 3 weeks and now I am feeling way worse. I am so much drier and can't get any relief. My neuropathy in my feet is much worse also. Would the antibiotics have anything to do with this? My doc's don't seem to know. How has your illness progressed. Do you have any neuropathy's? I am 43 and have 4 kids to still take care of.

Deb

[Guest guest]

Nan, About the antibiotics. That is what i meant, that I felt good while taking them and then when i stopped I felt worse than before I ever took them. With the first round I was drier in my eyes and nose and with the second round 2 weeks later, I was drier in my mouth and eyes and nose. I went from feeling almost normal in my mouth to very, very dry. Will things improve. Any idea why they do that? Debphancyforu@... wrote: Deb, I have no good news. The majority of Sjogren's specialists are located on the east coast where the original studies and disease diagnosed. The Sjogren Association was originally located in Long Island, NY. Then, they moved to NYC. I live in So Ca and only found doctors that specialize in fibro and arthritis. A lot of people complain they feel worse while taking antiboitics. Antibotics affect me the opposite way. I feel good while taking them and awful when I finish. I have neuropathy, which comes and goes. I can feel okay for a while and be unable to move the next. Auto immune patients told me this is normal. Nan Judy, I have been away on vacation and then life just has gotten busy. Getting caught up on the posts. i was wondering how you went about finding the immuno rheumatologist. I have a rhematologist but she doesn't specialize in Sjogren's and has recommended that i find one that does. I live in No. California in the east bay of the San Francisco area. I have hypo thyroid, LS and now since Feb. Sjogren's. I learned about all of these in the last 14 months. I went to the clinic in SF to get tested for the Sjogren's in a study. They don't treat you they are just doing a study. They told me that my symptoms would not get worse for at least 10 years as Sjogrens is a slow progressing diesease. However after feeling ok, I had to go on antibiotics for 3 weeks and now I am feeling way worse. I am so much drier and can't get any

relief. My neuropathy in my feet is much worse also. Would the antibiotics have anything to do with this? My doc's don't seem to know. How has your illness progressed. Do you have any neuropathy's? I am 43 and have 4 kids to still take care of. Deb

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