Are you Canadian? Have you been diagnosed with Tarlov Cyts Disease?

I'm sure you can see from this blog that most of what I write about is Tarlov Cyst Disease. 

Since this blog began, most responses to entries and views on the stat-counter are from Tarlov Patients, Medical Clinics, Physicians, Hospitals, Journalists and Writers from around the world.

Canadian Citizen Daily Battles

is looking

for

Canadian Tarlov Cyst Patients

Symptomatic and/or Non-Symptomatic

I am looking to find as many Canadian Tarlov Cyst Disease sufferers as possible to build a database of issues, experiences and references, enabling us to learn from each other and support each other through the many individual problems facing Canadians across Canada. 

I know through research that there have been a minimum of 17 Ontario WSIB Cases, and I couldn't even guess how many other Tarlov patients there are out there, unaware that Tarlov Cysts may be the one thing causing the many back and Neurological problems they are experiencing. 

Many different forms of Trauma-related injuries, including slips and falls, motor vehicle accidents, work-related injuries and many other forms of injury, bring on most symptomatic Tarlov Cysts.

It seems that the "Rare" part of Tarlov Cyst Disease perhaps isn't as rare as I, or any of us, may have thought initially. There are many more cases in Canada than any Canadian patient has been led to believe. It's time to reach out and say, "Hello"! 

I'm now publicly reaching out to every 

Tarlov Cyst Patient I can find living within Canada.

 The aim is to learn from each other. 

Learn your stories, find out about your Journey, 

the benefits and the barriers provided by our 

Municipal, Provincial and Federal Service Providers

and our Provincially managed 

Canadian Medical and Legal Systems.

Please create a new email, with a pen name if you need to protect your identity. 

All confidentiality will be maintained, and your name, and story will not be shared until you choose to do so, but I would need to be able to add your information to your Province list, which would include the following; 

• diagnosis details
• diagnosis date
• a short, personal statement written by you, providing basic information of your personal experience.

I am hoping to bring together ALL Canadians in the fight for recognition of this "rare" but devastating Disease. 

I'm confident we all have skills, experience and information, either past or present, that may be able to assist others with their fights with Physicians for care and Neurological Communities in our push for acknowledgement and understanding. 

We must educate Compensation Boards and Insurance Companies to protect valid Legal Claims for justified and entitled rights for trauma victims across Canada.

Together, we are stronger; Together we are no longer alone.

Please email 

Sherri Jones at:

sherri.jones@live.ca 

 I will get back to you through email as soon as possible.

ALL CONFIDENTIALITY WILL BE RESPECTED UNTIL INFORMATION RELEASES APPROVED.

Thank you for your time....I  look forward to hearing from you!!!!

Sincerely, 

Sherri L. Jones

TheSpec - Lyme disease patients at risk in Ontario (Click here for Article)

TheSpec - Lyme disease patients at risk in Ontario

It's unbelievable how day after day I come across stories about how Canadians are treated like a criminal for "daring" to say " I know I have -------!!!", which could be any of the many diagnosis that appear to currently be sitting on Canada's "DO NOT DIAGNOSE LIST".

I discovered the "DO NOT DIAGNOSE LIST" when I was diagnosed with Symptomatic Tarlov Cyst Disease, and now here's a story about how a diagnosis of Lyme Disease can put any other Canadian patient in the exact same position, as those with Tarlov Cyst Disease. The only difference? When you tell someone you have Tarlov Cysts they look at you like you have ten heads and say, "What's that?" But when you tell someone you have Lyme Disease that same person would probably recognize the name, but not suffer the same miraculous look of shock that the Tarlov Cyst name imposes.

I'm sure, or at least hope there is actually no such list, but considering I've been touched by both I am now truly beginning to wonder.

No it not a definitive diagnoses yet, but according to a Dermatologist I'd seen in 2006 to look for treatment for an intermittent, very strange, red, repeated and cycling rash. A rash that I always explained this way. "It's like a rock being dropped into a still pond and the ripples of the water move outward until they disappear and the surface becomes smooth and calm again.". That's my rash, the rash I've had for years on and off, intermittently for probably many years.

The visit to the Dermatologist appeared at first to be a waste of time as during the appointment when at first sight the Doctor had no idea of what it could possibly be! Then he offered to do a biopsy of one of the rash red spots and of course I said a quick "yes"! I just wanted to know what it was and get rid if it... so the biopsy was done and now all I could do was wait for a report.

Several weeks later I asked my Physician what the report said, and I was simply told I just have a sun allergy and I should be using a stronger sunblock and minimizing sun exposure. Made sense to me, and at the time I had not yet hit my "do not trust" limit with my Physician, so I just went along...... and yet again that may have turned out to be another of my extensive list of major mistakes with this Physician.

Today, I was looking through my medical files, which I have complete copies of and I found the Dermatologists report that said nothing about a sun allergy. What it does say as a diagnosis is: "Lymphocytic Infiltrate" with a differential diagnosis of, "Lyme Disease".

When I did my research the extremely similar symptoms of Fibromyalgia, another of my many, non conclusive diagnosis, sounded extremely similar to that of Lyme Disease. However, the most important symptom that quickly connects a diagnosis to Lyme Disease is the Lyme Disease rash; a rash described, intermittent and looking exactly like mine!!! Apparently the presence of that rash is one of the most confirming aspects of a Lyme Disease diagnosis.

So here I go back into research mode, the same type of research I had to do for my Rare Diagnosis of Symptomatic Tarlov Cysts. And what did I find when I started research on Lyme Disease? I found this Spectator article written earlier this year, and many other recent articles just like it confirming that I just might have another difficult time, within Canada, to get properly diagnosed and is once again controversial within the our borders!!!


I was once very proud to be Canadian, but there have been many times in the last year, such as right now, that I wish I could have private health care, be living somewhere else, somewhere less conservative in their Medical thinking. Some place more advanced in their abilities to diagnose, manage and treat these rare and difficult, not to mention detrimental to our health diseases!!!

So here we go again....... down the road of trying to get a rare test done that according to the attached article is not easy. Apparently Canadian testing is not capable of providing a definitive result. Again I may need to look south to get an accurate diagnosis.

There is however one thing that the Lyme Disease has going for it that I never had when diagnosed with Tarlov Cysts....... there is already a long standing, informed and educated advocacy group specific to Ontario and Canada. To me that's a huge positive seeing as with Tarlov Cysts there were no Canadian specific advocates already in place.... but I am still working to change that one. But with my health issues its great to know there's somewhere I can turn for advice, support and suggestions.

The facts I've discovered in this search leaves me with one really big question, "Where is Canada, and our internationally admired Health Care Programs, when I and other Canadian need you most?"

Again, I am forced to say once again. "No Canadian should have to do so much work, or fight so hard, while they are already suffering greatly, everyday, due to the illness they're fighting for recognition for?" 


As with Tarlov Cyst Disease, we Canadians deserve better when living with Lyme Disease,
Please, wake up, smell the coffee.... I'll even make it! But just wake up and see what is happening to us Canadians listed on the "DO NOT DIAGNOSE LIST"!!!!


Enjoy, welcome and I hope you can learn from my learning................... education truly is power!!!
Sherri Jones