Jennifer Wright's Story. I might have been first

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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Re: Jennifer Wright's Story. I might have been first

Postby patoco » Mon Aug 09, 2010 9:11 am

Hi Jwnnifer

I read your blog and found it quite interesting. I have had congenital lymphedema for some 56 years.

There are a couple things though that I would like to share about the treatment method that the doctors have used for you.

First, it is no secret that the pumps do move fluid. But, there is one very important problem. When you move fluid up out of the leg, it has to go somewhere. It is critically important that the abdominal lymph nodes/system be prepared so that the fluid can move from the legs to the ab where the lymphatics are able to carry it out of our system.

Usually this is not done and an enormrous amount of people who have used it have developed genital lymphedema from it. This is true for both male and female lymphers.

The Wright Linnear has proven no safer then the other pumps either.

Also, it is contradindicated to use any diuretics for lmohedema. The problem with diuretics is that it removes the fluid, but leaves behind the "waste" protein that fills the fluid. This, in the long term, creates bad fibrosis (hardening) of the tissues that ultimately makes the lymphedema worse.

These doctors, I'm afraid, just don't understand lymphedema.

I would urge you to see if there are any certified lymphedema therapists close to you that you can go to for both an evaluation and a treatment program.

By the way, KTW is one of some thirty plus syndromes that present with lymphedema.

My best to you and thank you for sharing.

Pat
patoco
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Re: Jennifer Wright's Story. I might have been first

Postby patoco » Fri Aug 27, 2010 10:42 am

I deleted the original post as it was called to my attention that her blog also requests donations. Please folks, do not ever give donations to anyone unless you are able to verify they are valid -or a legal non-profit that really does help people. There are just too many scams on the internet where people loose millions.

Pat
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