Broken_Shell Posted March 24, 2009 Report Share Posted March 24, 2009 Hi All,Just wondering if any of you from the Milwaukee, WI area are familiar with the Froedtert Clinics dysautonomia support group. I saw information about it during my appointment with the neurologist last week and was curious if anyone from the area has been to the group and can tell me about it. I was hoping to feel up to attending the meeting on April 1st, but am now being admitted to the hospital on that day for some GI testing and won't be able to make it. Thank you much for your feedback if you are familiar with or have attended this group. Hope everyone is having a tolerable day!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
mjan Posted March 25, 2009 Report Share Posted March 25, 2009 ME ME ME !!! I took their flyer but then I was not sure at the time what the heck my DX is..and I work until 7pm on Wed..so I didnt know if I would even go...why? I dont know yet where I belong. But..today saw my PCP and read my report and I do have some kind of autonomic problem.So you are not going in April??? We could MEET sometime. I would have to change my work hours for that day. Let me knowJan Quote Link to comment Share on other sites More sharing options...
julie f Posted March 25, 2009 Report Share Posted March 25, 2009 Hi, I am about 30 miles from Milwaukee. I have been to Froedtert for autonomic testing. I have been diagnosed with POTS, Sjogrens, and Raynauds. I did not know that there was a support group in the area. I am not sure what time the group meets, and my problem is that after working all day, I am too tired to take that kind of drive at night. My vision stinks by the end of the day. Night driving is a nightmare. I'd be interested in hearing more about the group though. Julie Quote Link to comment Share on other sites More sharing options...
mjan Posted March 25, 2009 Report Share Posted March 25, 2009 Hi, I am about 30 miles from Milwaukee. I have been to Froedtert for autonomic testing. I have been diagnosed with POTS, Sjogrens, and Raynauds. I did not know that there was a support group in the area. I am not sure what time the group meets, and my problem is that after working all day, I am too tired to take that kind of drive at night. My vision stinks by the end of the day. Night driving is a nightmare. I'd be interested in hearing more about the group though. JulieJulie I know what you mean about vision problems and driving at night. The group meets the first Wednesday of the month I guess from 6-8pm. In summer it stays light until 8pm. On the odd months of the year they host a speaker. Its in the Community Conference Rm #2 8700 Watertown Plank Rd which is NOT in Froedtert hosp but on Watertown plank rd. PM me I 'll give you the names and numbers.I too have Sjogren symptoms which they now are just thinking its more of the autonomic part so I no longer take the RX Plaquenil or Methotrexate..do you ??You can PM me and at least communicate via emal if you like..let me know k?Jan Quote Link to comment Share on other sites More sharing options...
icthus Posted March 25, 2009 Report Share Posted March 25, 2009 I am about 60 minutes south of Froedert - in Illinois - and my neuro is at Froedert - great place, but too far for a support group given current limitations. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted March 25, 2009 Author Report Share Posted March 25, 2009 ME ME ME !!! I took their flyer but then I was not sure at the time what the heck my DX is..and I work until 7pm on Wed..so I didnt know if I would even go...why? I dont know yet where I belong. But..today saw my PCP and read my report and I do have some kind of autonomic problem.So you are not going in April??? We could MEET sometime. I would have to change my work hours for that day. Let me knowJanHi Jan,I just saw your message. It sounds like you know quite a bit about the Dysautonomia Support Group at Froedtert. I didn't realize that it didn't actually meet at Froedtert, so I am glad that you mentioned that. I took the information paper from the clinic, but since I'll be in the hospital on the 1st, I know I won't be able to make it which is disappointing because I was excited to see a support group in Milwaukee. If you go on the 1st, will you please PM me and let know how it goes, what the meetings and member are like, etc.? Thank you so much and I hope that you are feeling well enough to make it to the meeting! Take care ~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
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