What kind of doctor

[Selina]

I'm new to this group and need some information. I've been swollen in my legs since 1987. I've seen at least 15 different doctors and to make a very long story short, I've been told that most of my problems are in my head and I need to get exercise and lose weight. I have never had any doctor tell me that I had lymphedema, and only just this week discovered that there was such a disorder. I found pictures on the net which could be of my legs and everything I have read tells me this is what I have.

My question is this, what kind of doctor should I see to get a diagnosis? I've never had cancer, but I've had several surgeries that could have been the cause of this. I have been to general MD's, internists, rumatolagists and the like, but never a vascular doctor. Is that the kind I should see? I need to get a diagnosis because I can't stand the pain any longer and can't hold a job. I haven't worked for a year now and I need to find a doctor who will either fix me or support me to get disability.

any help will be appreciated.

Thanks

[Helena]

Hi Selena, I'm sorry you haven't found help before. Here is some information that may get you started.

There are two main types of lymphedema. The type caused by cancer treatment is secondary lymphedema. There is another type, which may be what you have, that is called primary lymphedema. This is an inherited disease, it usually affects the feet and legs of women, and can occur at any time of life.

My suggestion is that you get a medical professional to refer you to a qualified lymphedema therapist for a consultation. The therapist should be able to tell you if you have lymphedema and also to help you control the swelling. BUT to get started you do need a referral from an MD. Usually a family doctor can do this. If you want a specialist, try a vascular surgeon.

I hope this information helps. Also try reading the stories and postings here -- there is so much you can learn and you will discover that there are great people who post on this web site.

Good luck -- please keep us posted.
Helena

[Shautru]

For me, it was my Physical Therapist who was treating me for my Degenerative Disc and Joint disease. She saw the swelling in my legs and just by chance her mother-in-law happened to be an LE Phys Therapist.

Anyway, being a PT she couldn't diagnose, but I went to my regular MD who then sent me to a Cardiologist who declared it officially as LE and sent me to an LE PT.

I had for a year been asking about my swollen leg, but it wasn't until my regular PT said it looked like LE did something actually happen.

[Heartstilted]

Hi Selina,

I just joined in here too.

I had started going to an alternate medical doctor (he believes in homeopathic treatments and other forms of treatments) initially because he was recommended as a great hypothyroid doctor which I do have. The first day I saw him he looked at my legs and called it elephantiasis and I was dismayed because this sounded so horrible. Hadn't any clues what it was really though. He started doing acupuncture treatments for it and an associate who does therapeutic massage treatments (a massage that helps gets the circulation going in my legs better). I see them both about two times a month. Within a couple months, he wanted to verify that this was good enough treatment and sent me to a Skin and Cancer Center here in my city and the lead doctor there was who I was consulted and he immediately called it elephantiasis too and in time I learned that this is a stage of lymphedema.

I have been looking for more information online and have found varying websites and some places are recommended but so far only therapists. I have heard pros and cons of treatments which is another reason I am here to learn more about it all and I have also read about medication that may be taken, but not sure if I am too far gone for this type of treatment.

I would say find yourself a doctor for alternative medicine by doing a search online because they treat you much better than normal physicians I think (I am 47 and have had my long list of doctors). Then request a referral by this doctor to a specialist like the type I saw and see what can be done.

Hugs to you!