new and full of questions

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new and full of questions

Postby chiaralilac » Thu Aug 07, 2008 1:30 am

Hi everyone,
I hope you can help me. I have been ill for 35-40 years. I have diagnosed myself with lymphedema and have finally gotten a my GP to work with me. To make a very long story short, I have had problems with my glands enlarging for years, my neck, armpit, chest, and groin on my right side. Septic twice, two (possibly three) absesses (one became a fistula), feeling so tired I didn't want to go on, achy. Have had chronic strep, sinusitis, and iridocyclitis (eye) I always fought for antibiotics as I felt better when on them. Went blind in right eye, had cataract surgery, am losing sight again. I went to an eye specialists and have tried every one of their cures including the normal one of biologicals (chemotherapy) for 5 years (supposed to have been 2) Didn't work for me. I continue to have extreme daily spikes of high pressure in my right eye, along with tearing, very painful. For a long time it was swollen every morning. A year and a half ago, I had a traumatic time with my eye and illness and my neck got an egg size swelling in just a few minutes-hard and painful. Often it felt/feels like someone is strangling me. I ran to 16 doctor appointments in 2 weeks to try to save myself. My sight came back mostly but now I have just totally gone down hill. My right ear rings and I lost some hearing, the right side of my face always feels under pressure way inside and behind my eye. It is hard to turn my head to the right because of the swelling inside my neck and cheek. Even around/in my ear gets (swollen) and painful. My worse time is nights when the pressure rises in my head and eye, neck and now chest. I awake with a very red and sore eye every night, swelling/pressure goes down when I get up (but not away) when I am vertical. I hate to sleep, I try to stay high but end up slipping down. I hurt so bad and feel so sick and it makes me feel so agitated. Last May, I caught a cold and woke up blind on the second day from the pressure in my head. I have now convinced my doctor that I have lymphedema (thanks to your website) which is the only diagnosis that explains all (every one) of the problems I have had all these years. I'm on antibiotic therapy, plus one for lymphangitis (again), diuretic for my eye, benedryl, and massage therapy on my face, neck. My major question is this, I feel the doctor believes it is minor swelling related to what he can SEE on my outer face, feel on glands or feels/sees on my facial hot spots. I feel the inside is worse, however, because it effects my thinking/speaking and the pain effects my outlook. Also I feel the pressure is causing me to have seizures again. And the feeling that I am strangling or something heavy is on my chest or I just want to yank my eye out, puts me at my wits end. Anyone have same or close, have any answers or ideas? Hey, I thought I was making it short and it really wasn't whole story but it's a lot of baggage. Thanks for your time.
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Joined: Wed Aug 06, 2008 3:37 pm

Re: new and full of questions

Postby donsuzbee » Thu Aug 07, 2008 1:11 pm

I am so very thaknkful that after all these years you have found some kind of answer to your problems. LD does not go away - just stays. The meds you are on seem to have given you some relief. Perhaps if you could focus on the relief for awhile it may help you.
I have secondary LD in my upper right quadrant - neck, chest, back and arm. I'll admit I get complacent about wearing my bandaging - have worn it 5 years now. And lately It seems to be more of a problem that it seemed to be originally. But I have come to realize that it is because I now have other health problems and more tired thus less patience.
I know this is all easier said than done. Hang in there as you have been; you are on the right track now beginning a new journey, but at least you have more good answers than before.
God bless!
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Joined: Thu Jun 15, 2006 8:32 pm

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