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How Do I Get a Diagnosis?? Pat Help!!

PostPosted: Sat Aug 08, 2009 12:27 am
by cathyrules
Hi everyone,

Pat I hope you see this, I need some help! From all of the research I have done I believe I have lymphedema in my lower legs. I went to a certified lymphedema thereapist (15 years experience with lymphedema) to confirm. She believes I might have a combo of lipedema and lymphedema.

I am trying to get treatment and really need to get a doctor to give me a diagnosis. Does anyone know what type of doctor can do this? My GP does not have the experience I need for this.

The therapist I saw was great but with the severity of my case she recommended an inpatient program to get my legs to a manageable stage. But to get into one of these programs in Canada (hard to find) I need a doctor to diagnose me.

Can anyone help? I am lost and really really in need of help. :cry:

I appreciate any help/advice!!

Cathy :(

Re: How Do I Get a Diagnosis?? Pat Help!!

PostPosted: Sun Aug 09, 2009 4:25 pm
by patoco
Hi Ya Cathy :)

There are a couple types of docs which seem to be better at diagnosis then others.

One group are plastic surgeons. Watch out with them though, if they do diagnose you, then they'll be talking of surgery which you should run from.

Another group - and actually several of our well known LE docs are this type - are physiatrists. A physiatrist is a physician who specializes in physical medicine, which is the curing of injuries and disease by natural methods. Measures that are used include physical therapy, massage, exercise, light and heat. Dr. Paula Stewart who runs an inpatient facility in Alabama is a physiatrist.

A good oncologist should be able to diagnose LE and surprisingly most of them are aware of LE because of their own patients.

I do have a couple docs in Canada that others said were helpful. You'll want to call them first to double check though - they are:

Canada

Province of Ontario

Dr. Roman Huhlewyck
3030 Lawrence Rd. East Suite 502,
Scarborough, Ontario, Canada

Phone Number: (416) 439-1504

Province of Quebec

For secondary lymphedema:

Dr. Anna Towers
lymphedema clinic, McGill
University Health Centre, Montreal General Hospital site,
1650 Cedar Ave, E17.173,
Montreal H3G 1A4,
telephone 514-934-8412, fax 514-934-8415

The other closest ones to you may be in New York:

NEW YORK

Dr. Stephen Sipperly
5 New Karner Road Suite6
Guilderland, NY 12084
phone: (518) 869-8007
Fax: (518) 869-8742

..........

Christian Custodio, MD, Rehabilitation Service/MSKCC
Appointments for New Patients:
(212) 639-7834

Phone
(212) 639-3348

MEMORIAL SLOAN- KETTERING CANCER CENTER
1275 YORK AVENUE, NEW YORK, NY 10021
(212) 639-2000

One of the best pages of info on diagnosing LE I've seen on is here:

How to Diagnose Lymphedema

http://lymphedemapeople.com/wiki/doku.p ... lymphedema

For lipedema, there is a wonderful chart on our lipedema page:

DIFFERENTIAL DIAGNOSIS FOR LIPEDEMA - Lipedema page

http://www.lymphedemapeople.com/wiki/do ... d=lipedema

Scroll down, it is the section section.

Also, to confirm a diagnosis, you could have lymphscintigraphy- and this would show specifically where any lymphatic blockages are:

Lymphoscintigraphy

http://www.lymphedemapeople.com/wiki/do ... intigraphy

Hope this gives some ideas - let me know if you need more and I'll be more then happy to help :wink:

Pat 8)

Re: How Do I Get a Diagnosis?? Pat Help!!

PostPosted: Tue Aug 11, 2009 10:44 am
by joanne johnson
Hi Cathy, I also have lymph in my lower legs. I had no idea what caused the swelling. I went to a vascular doctor who diagnosed it immediately as soon as he looked at my legs. There was no question about it. I guess I was "lucky" if you want to call it that. Good luck to you!