My Story and questions

  • 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.

5 comments
  • Jennifer Kramer
    Jennifer Kramer Hi Sylvia,
    I'd be curious to hear whatever you hear about the autoimmune disease link. I only have (albeit significant) allergies--no other autoimmune issues to date. However, since LE is an autoimmune problem, and I'm beginning to have some joint problem...  more
    April 28, 2009
  • <i>Deleted Member</i>
    Deleted Member I, too, have lupus SLE. I have had 9 total surgeries on my left knee. about a year ago, I developed cellulitis, probably from a small irritation or cut on that leg, I developed a staff infection in my knee, and had 2 surgeries, within 3 weeks to clean o...  more
    May 15, 2009 - delete
  • <i>Deleted Member</i>
    Deleted Member I am Susan, i wrote the last comment. I can't figure out how to get my name on my comments
    May 15, 2009 - delete
  • Sylvia Shaw
    Sylvia Shaw Hi Susan,

    Thank you sooo much for your comment!
    It must have been so scary to go through that! I'm sorry to hear that you had to endure that scary time!! I'm so glad to hear that God blessed and things turned around for you!

    My last bout...  more
    May 18, 2009