Rheumatoid Arthritis and Lymphedema

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Rheumatoid Arthritis and Lymphedema

Postby cusuen » Tue Feb 26, 2008 10:13 am

I have Rheumatoid Arthritis

A private therapist I am seeing is convinced I have non-cancerous Lymphedema of both legs which is probably compounded by Lipedema.

I have pain and swelling in both my legs, the right more than the left, and am having more and more difficulty ambulating.

I also have Fibromyalgia and Chronic Myofascial Pain which are rather well controlled and treated. I am no stranger to chronic conditions and am an advocate for my own health care ... BUT ... I am stymied by my current problems.

I am in London, Ontario, Canada and am rather frustrated.

My Family Doctor and my Rheumatologist both deny that Lymphedema is a diagnosis that they can give me.

Both my Family Doctor and my Rheumatologist have offered no help in either diagnosing or treating the problems I am facing.

The therapist I am seeing is a Glascow post graduate trained Nurse who has her Graduate Diploma in Lymph Management from the University of Glasgow in Scotland, UK.

I am paying out-of-pocket each time I see this therapist and can no longer afford to see her. Neither my provincial health care nor my private insurance carrier, let alone my Family Doctor and my Rheumatologist, acknowledge that this is a problem that even needs to be addressed.

I am facing knee replacement surgery because of OsteoArthritis changes in my knees as well. I do not wish to undergo surgery until the problems of Lymphedema and Lipedema are addressed, diagnosed and treated/controlled.

HELP ... please ...

thanks and cusuen
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Postby patoco » Tue Feb 26, 2008 5:09 pm

Hi and Welcome to our Family Here :)

Is the therapist you are visiting certified in the treatment of lymphedema? I have not heard of nayone actually having a degree in Lymph Management. See what her credentials are for treatment - where she was trained etc.

A trained certified lymphedema therapist should be able to offer a diagnosis and information to the doctors, who can then acurrately diagnose you.

If they are saying it is not lymphedema, then what do they proppose instead?

BTW, Are you familiar with the Lymphovenous Assoc of Ontario?

The Lymphovenous Association of Ontario is a support group for individuals, families and health care professionals with lymphatic disorders such as lymphedema.

Once a year the group holds its annual general meeting. It also puts out a newsletter three times a year. The Association is currently trying to improve ADP program coverage and improve coverage for CDT. It has a resource kit to help people lobby for improved services and an information package on how to get better insurance coverage.

The group has established a lymphedema support group led by Ann Blair, RN who is a primary care nurse at the Regional Cancer Centre, Toronto-Sunnybrook and Ruby Kreindler, a social worker who has had lymphedema and experience as a counsellor and in leading groups. It has been successful in getting a permanent Lebed exercise program established at the Sunnybrook Health Sciences Centre and at the downtown Toronto Wellspring cancer support centre.

LAO has also just opened an office to provide better visibility within the community. Congratulations!

On Nov. 10, 2007 approximately 200 people attended the LAO "Lymphedema Matters" conference.

For a copy of a cd or video of the conference you can contact the LAO at:

Lymphovenous Association of Ontario
4161 Dundas Street West
Toronto, Ontario M8X 1Y2
For information call: 416-410-2250 or toll-free at: 877-723-0033
Web site: http://www.lymphontario.org/

Its a good group, you may want to contact them too, to see who they might recommend in your area.

Write me back and tell me a little more about the LE - like when it started etc. One way or another, we will find an answer.

Look forward to hearing from you.

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Postby cusuen » Tue Feb 26, 2008 8:41 pm

Hi Pat and thanks for the welcome: :)

I am very aware of the Lymphovenous Association of Ontario. It was from them that I received an introduction to my therapist who is indeed certified as a Lymphedema therapist according to the LAO. She is a graduate of the Lymph Management diploma program at Glasgow University in Scotland and is now a Registered Nurse here in the Province of Ontario. She is Scottish born and only immigrated to Canada a few years ago when her husband received a posting here. She persevered and finally, after writing Ontario nurse registration exams, is a Registered Nurse in Ontario. She was working as a Clinical Nurse Specialist in Glasgow but is not recognized as such here in Ontario. She has started a one person Lymphedema Centre here in London but because of her need to work as a nurse a couple of 12 hour shifts a week, is not able to give the care she would like to give to her clients. In Scotland and other parts of the United Kingdom, Lymphedema is much better understood than it is here in Ontario.

In Ontario, the certification of a Lymphedema therapist is not governed by a College or the government so this classification is of no importance to anyone but the therapist and his/her clients.

In Ontario, it is not possible for a Nurse to diagnose. I am a retired Nurse and know this to be true. The Medical profession rules! In Ontario the only possible cause of Lymphedema that is even considered is cancer related or primary ... nothing else is understood! Primary Lymphedema is not well understood but some folk are working in this area now. I know my statements are all encompassing but that is what I am finding!

Please believe me when I tell you I am frustrated! :(

I went through the same run around with getting Diagnoses of Fibromyalgia and Chronic Myofascial Pain ten years ago and unfortunately for me, the Family Doctor I had then who was prepared to learn has retired.

Hence my asking about the quote that "Lymphedema is a well known extraarticular manifestation of Rheumatoid Arthritis". If this is so why does my Rheumatologist not even consider that this is a possibility in my case? Please may I have references, other than the one cited to indicate that this is indeed so.

Helen, my therapist, is attempting to assist me. My Family Doctor does not agree that it is possible for my problems to be Lymphedema nor for there to be any question of Lipedema. My Rheumatologist is of the same mind set!

My concerns about Lipedema will of necessity be addressed eventually but not now!

I have asked my Family Doctor to contact Helen but whether he will do so is completely up to him.

With about 1/3 of the population in London, Ontario without a Family Doctor, it is a travesty to suggest seeking a second opinion! I am fortunate to have a Family Doctor; otherwise I would be sitting for hours on end in walk-in-clinics and not seeing the same doctor on more than one occasion.

I cannot continue to see Helen regularly as the cost is prohibitive. I do have insurance that will cover part of the cost of custom-fit compression stockings but they have taken over a month to arrive. I hope to pick them up tomorrow. Without a confirmed diagnosis by an MD here in Ontario, I have little chance of even appealing decisions by our Provincial Health Plan or my private insurance carrier to not support my requests for treatment!

I have asked my doctor to refer me to a Vascular Surgeon in Toronto, Ontario, whose name I was also given by the Lymphovenous Association of Ontario, as I cannot see this doctor in Toronto, or any specialist for that matter, without a referral from my Family Doctor. Helen took me as a patient because she is as concerned as I that something needs to be done!

I must give my Family Doctor credit, he has said he will look up what tests there may be to diagnose Lymphedema. His statement, when he saw me on Monday, that the only way I could possibly have Lymphedema is if the lymph nodes were removed when I had abdominal surgery in 1988, tells me a lot about his understanding of Lymphedema.

It is a no brainer that I will not be referred for an MRI as they are not available except to the very, very few here in Ontario; nor for a CT scan as the only two machines here in London, Ontario, were damaged a few weeks ago when the area received water damage. The wait times for MRI's and CT scans are prohibitive anyway here in Ontario and will definitely not be used for such as I! I have had Doppler ultrasound of my legs which showed absolutely nothing except the Bakers cyst at my right knee. My Doc does not believe his own assessing of my signs and symptoms but he might possibly refer me for radionuclide imaging of my lymphatic system (lymphoscintigraphy). My concern about lymphoscintigraphy is that if the doctor who is reading the x-rays is not familiar with Lymphedema that he will not even suggest that possible diagnosis. It is, after all, the interpretation of the results that may lead to a diagnosis.

I will be attempting to phone the Vascular Surgeon's office in Toronto when I am in Toronto later this week to ask for his assistance as well but that is yet to happen!

I know something will come of my quest but it is taking too long! and my legs are hurting! and my mobility is getting less and less easy for me! ...

Thanks again.

Susan and cusuen
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