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! ...
Susan and cusuen