Help

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Help

Postby megthumm » Fri Sep 14, 2012 11:43 pm

Hi all, I am an old member with some new questions. I have milroys, in one leg and it developed in the other at age 12. Back when I was 2 I started having debunking surgeries at Boston children's hospital. They stopped at age 13 because of the AIDS epidemic, and my need for numerous blood transfusions. My legs are pretty much a mess. In the past I have done the wright pump, mld therapy, I wear constant jobst stockings( that don't fit well). Anyway , I actually work full time as a nurse. Frankly I'm sick of always being in pain. I have seen every dr, and I don't think they believe me. I have tons of scars and bruising on my primary leg, there is also a painful red sore behind my knee. They have tried abx, steroids, and various creams. I have done lots of research, and can't find an appropriate dr. My dr really doesn't know much about it at all. I just wonder how people do it. I work full time, have a husband and two kids, and a dog. I am feeling tired. I have been stoic about it a long time and basically keep my pain to myself, but my own family-husband thinks I'm trying to get out of work or doing things when the dr says to elevate my legs. I need some advice from those who have it. I hate all these appts and not getting anywhere. I'm thinking I can't manage this while working. I would love some advice/suggestions. Thanks Meg
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Location: pa

Re: Help

Postby patoco » Sat Sep 15, 2012 9:59 am

hey Meg

Have you gone to see an infectious disease doctor about that red spot? Have they even bothered to biopsy it? I would get to an ID doc, and demand (raise hell if need be) that they biopsy that spot. If it is an infection, then obviously the doo doos are not using the correct antibiotic. If it is something else, they need to find that out too. Plus, and I don't want to scare you but they really must rule out a possible malignancy too. Don't let them say no. BTW, the ID doc may not know much about LE, but he will know a lot about infections.

I can't believe that in 2012, people still are not being believed when they speak of pain with LE. Mine was so bad that I understood why people blow their brains out to get away from it. My doctor finally convinced me to go on a long term, low dose pain med therapy. OMG, Meg, it's been like the difference between night and day. There is absolutely NO need for any of us to suffer with the pain that can come about with lymphedema, especially the pain that can come with Milroy's (that the LE that runs in my family too).

BTW, the pain was so bad that it did start effecting my work, so I know full well what you are talking about. LOL...I would love to tell that husband of yours to get his head out of his alimentary canal and understand this isn't something you are faking. LE is real, the pain is real and the need to have that leg elevated is real too.

My heart goes out to you!!!!!!

Here's a big cyber hug too!

Pat
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Re: Help

Postby megthumm » Sat Sep 15, 2012 10:40 am

Hi Pat, thanks so much for your reply. I have had the spot for over a year, I have seen ID and they suggested wound care. I went to my primary and he is sending me for an MRI. It's funny that my leg with less surgery is in much better shape. Honestly I have gotten used to the daily pain, as I work 12 hour shifts on my feet, but that spot is very sore and my pantyhose rub it all day long. I have had different creams,antibiotic, steroid etc. and have taken keg lex and bactrim to no avail. I'm a little worried cause it will scan over then peel off. My dr wants make sure there is nothing underneath the red area, then biopsy it. I'm afraid to have that done because it is an area of dense scar tissue and may not heal. Funny thing is my dr told me I should keep my legs up at home, but I can still work ? this seems odd cause of course my swelling is worse during a 12 hour shift.

I also saw a specialist about a year ago and she suggested more massage therapy. I just don't have the time. I tried it once before, but could not keep the wraps on long enough to make a difference, I had to take them off to work. I also can't take off for 6 weeks to really let it help. I feel kinda stuck. Oh I have also had steroids injected into the spot. Oh one other question. Do you have bruising on your leg? I have weird black/blue marks all over that never go away. I did have one of those biopsied but dr said it was just from the surgeries. They seem to be increasing however. It's nice to have someone who understands all this . :)
megthumm
 
Posts: 11
Joined: Mon Apr 12, 2010 1:14 pm
Location: pa

Re: Help

Postby patoco » Mon Sep 17, 2012 9:27 am

Hi Meg

I understand your concern about the area being so fibrotic, but it still needs to be biopsied. My left leg is terribly fibrotic and while the healing is slow, I haven't had any problem with infections or other complications.

The black and blue areas seem to be to possibly be related to a vascular problem (cardio) instead of a lymph problem. One of my nephews initially had a serious vascular problem and when they operated on it, lymphedema was triggered. Also, some of those areas will undoubtedly come back as a simple "fibroma." These are tumor stemming from fibrous or connective tissue, and again common with LE. Oh, before any surgery though be sure you are put on a course of preventative antibiotics. LOL..ask I always say, don't ask you doctor about this - tell them. :P

Sure wish you could get custom fitted for compression garments, then you wouldn't have to worry about them falling down during the day and they could even be worn at work. That would be a super help for you.

We all, it seems, are many times between a rock and a hard place with this condition. I know I am and have been numerous times. Ya just gotta say "darn the torpedos, full steam ahead" :)

Pat
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