New in Missouri

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New in Missouri

Postby wubywoo » Wed Nov 12, 2008 9:07 pm

Hi everyone. I'm undiagnosed with lymphedema. I stumbled across this website during my searchings and hope that it can help point me in the right direction and find a doctor that understands this condition.

I've been dealing with minor arm, hand, and finger swelling since '96. Always thought it was due to my job (I did a lot of data entry and keying). My fingers and arms would swell after working; they would swell just enough that I could feel tightness and a feeling of tiredness in the arm. Then they would swell whenever I would go shopping and my arms would hang down while walking or the arm that my purse was on would swell. In 2004 I had ACL surgery on my right knee and the swelling never went down after the surgery. I had an untold amount of dopplers on my leg looking for DVT's, but the only thing they found was fluid. In 2005 I got real sick, real fast. Thought it was the flu, but my fever soared up to 105 and I developed spot on the back of my left leg. It looked like a sunburn at first, red and blistering, but then it turned a blackish purple and spread from halfway up my calf to the top of my heel. I was hospitalized for it and they said it was a strep infection. Since then both legs swell up very badly. The top of my feet look like camel humps and I have bulging cankles. My legs will get small sores on them that weep clear fluid. I don't know if it's lymphorrhea or not because it's clear and not yellowish and so far it has caused any problems with my skin. After the hospital, I saw an infectious disease doctor and he mentioned lymphedema and had me do cetapress wraps and diuretics to get the swelling down, then he turned me back over to my PCP.

The only thing my PCP did for me was put me on ever increasing dosages of lasix. I started out at 20mg once a day and as of this year I was on 80mg 3 times a day. This is not helping and I think it's doing more harm than good.

So I'm hoping that maybe Pat knows some good doctors and therapists in the St. Louis area than can help. I'm not sure what kind of doctor I need. I've seen on the internet where endocrinologists and vascular surgeons sometimes work with lymphedema patients.

My legs are really swollen right now. I've started feeling pain and numbness in my toes and up and down my legs and feet so I know I have to do something soon before it's irreversible.

Thanks for listening to me ramble and now I'll go back to lurking.

wubywoo
wubywoo
 
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Re: New in Missouri

Postby Celinda069 » Sat Nov 15, 2008 11:35 am

Hi.. although I am also new to lymphedema my first suggestion to you is to find a therapist who specializes in lymphedama therapy- (which includes manuel lymph drainage, wrapping, and exercises). He or she may be able to point you to a doctor that deals with lymphedema and get you in a therapy program- which helps! I know the doctor i saw dealt with cancer patients since cancer patients who have lymph nodes removed sometimes deal with lymphedema. My therapy program comes out of John Hinz, I dont know if you have this in your area or if it is inclusive to mine. I will try to remember to ask my therapist if she knows anthing in your area or how to go about finding one. My therapy has been going on for about 2 weeks now and i already see improvement. I can actually see my ankle again :D My second suggestion is to get off of those lasix pills (of course consult with a lyphedema doctor or therapist first) the only thing they do for you is drain water leaving behind all the lymphedema protien which causes hardening. When the doctor was trying to figure out what was wrong with my leg he had me on them too- they did nothing for me. Anyway.. I hope this helps.

Celinda

P.S. the top of my foot looks like a camel hump too.. I feel your pain.
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Re: New in Missouri

Postby pattidee » Fri Dec 19, 2008 12:37 am

Hi,

My 16 year old daughter was just diagnosed. We live on the other side of the state in the Kansas City area. After 6 years of searching for a cause for her swelling in her ankles and feet, we finally went to a vascular surgeon. He ordered a test - I can't remember the name - but they injected radio active dye between her toes and after a couple of hours of walking, they did a series of "pictures" of the dye traveling through her lymph system. Anyway, they determined she didn't have cancer and sent us to a place called Cancer Rehabilitation, where she receives massage therapy and wrapping. You could call there and see if they know of any treatment facilities in St. Louis. The number is 913.491.9404.

My suggestion would be to see a vascular surgeon. I'm sure since St. Louis is such a big city that there are all kinds of resources there. It is just a matter of finding them.

Good luck to you!

pattidee
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