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My Story and questions

• Posted by Sylvia Shaw April 22, 2009 - 6,950 views

  Hi Everyone,

  I am new to this community, too.

  I did notice slight swelling in my feet and lower legs on and off for awhile before a flare up one day. I was 33 when one summer day just after a grueling 4th of July weekend of cooking etc. I noticed my lower left leg had swelled to probably 2x its normal size.I went to the Dr. and he thought I had a bloodclot in it and put me in the hospital for 2 weeks while he treated me for that. Well, you can probably guess that after I was released my leg stared to swell again. When it did I returned to the Dr.  He sent me for a lymphangiogram and then told me I had a blockage in my lymph system. He never used the word lymphedema. Shortly after that I had my first bout with cellulitis for which my Dr. admitted me to the hospital for. After my 2nd visit to the hospital I just happened to be looking in my local telephone book for something and a listing for a lymphedema therapist which was highlighted jumped out at me. As I was mulling over and thinking about the word I was suddenly sure that that is what I indeed had. So I called the therapist and made an appt. While talking to her she assured me that I did indeed have primary lymphedema and she started the MLD. I believe I have a quite mild case, for which I am thankful! From reading the stories on here other than the several bouts with cellulitis and one bad case of a staph infection I don't have anything to complain about. I have been able to pretty much keep it under control even though I haven't really used even the compression socks since last summer.

  Now, I do have a couple of questions.

  1. I have recently been dx'd with  mixed connective tissue disease with lupus/RA overlapping. Does anyone else have autoimmune disease issues as well?

  2. Also, I have been treating this new disease naturally as I won't take the meds they want me to take because they will kill my immune system altogether which I need when I get cellulitis.  But just recently I have had some weakness in my calves which I haven't had since I started my natural regimen.

  It just occured to me that it could be due to the lymphedema. Could it? I never had pain or weakness from the lymphedema before so I don't know whether it's from the MCTD or the lymphedema.

  If anyone can help at all I would appreciate it!

  Thanks,

  Sylvia S.