Doctor-less in Vancouver BC
For more than 10 years I have been sick with migraine headaches, lethargy and brain fog which have come in larger and longer waves.
I recently moved to Vancouver, BC from my small hometown on a nearby island. I had come to somewhat of a standstill with my GP and was hoping that when I moved to the city I would find better care.
One of my other MD practitioners mentioned I should get testing done, that perhaps I had Chronic Fatigue Syndrome (ME) or Fybromyalgia but since those are diagnosis of exclusion, I would need extensive testing.
I have had the worst wave yet since moving, and went to get some tests a few months after my move. One Dr claimed he would test me for everything, and did the most basis panel possible. When things came back flagged, he dismissed the results, ordering nothing more and being ... less than we all hope for anyways. I went to another clinic after my symptoms got worse and found my WBC @ 3300 (3.3) with another couple flags raised (Neutrophils 1.8 and slight Lipemia). I don't know if it is related or not but my GFR is something that has been monitored for the last year as was my low blood pressure. Looking at the flags, then my symptoms and doing research is what lead me to lupus.
At that point I asked for a ANA test, which the DR was extremely hesitant to perform. He outright said no until I asked what harm it could do. Anyways, I digress- sorry to rant. The ANA came back positive, =>1:640 Speckled (I know because we can check our Labs online, not because I got a call from the office).
I have many of the symptoms of Lupus and I am exhausted. Right now bed is my best friend and closest confident. I don't have the butterfly face rash or the typical lupus rash, so there is the possibility that something else is at play here. But something is going on and I am wondering if anyone in the Vancouver area can recommend a GP who is still taking new patients and is good. I don't really know anyone here. I can't get a rheumatologist referral without first finding a Doctor to make the recommendation, so any support from those who have some experience would be amazing! It's so refreshing to find others who have gone through this. Reading your stories gives me hope and shifts some of those feelings I have of being so isolated. Thanks for being angels!
Last edited by need2kno; 01-19-2012 at 06:27 PM.
Hi, and welcome to WHL!
I can't help you on the doctor situation, since I live in the US. We do have a few Canadians here, and I hope that one of them gets in touch with you.
Meanwhile, keep reading the threads that interest you, especially the stickys. You will learn a lot, and you'll be well prepared for that next doc appointment.
The Following User Says Thank You to magistramarla For This Useful Post:
hi, and welcome.
i am not a doctor....
but i suggest seeing a specialist called a rhuematologist.
they specialise in the type of issues you have.
there is other members from vancouver on here.
sorry i cannot remember there name at the moment.
The Following User Says Thank You to steve.b For This Useful Post:
Hello my fellow Canuck! Welcome.
I'm on the other side of the country in Ontario, so I'm not much help with a doctor, but there are a couple of thread here you want to look at. One is called "Who and Where is your Doctor". Hunniebun wrote: "I see Dr. Yolanda Cibere at the Mary Pack Arthritis Centre of Canada in Vancouver, British Columbia". Maybe you could send her a personal message and ask for her thoughts on a GP.
There is another post called "Nobody from Canada, eh?"
I understand your frustration. I have a crappy GP, but we have gotten to the point in our relationship where I tell him what I want/need, like a referral, and he does it. Probably just to get me off his back, but it's working.
Welcome, Good luck and I hope you are feeling better soon.
The Following 2 Users Say Thank You to running girl For This Useful Post:
need2kno (01-26-2012), steve.b (01-21-2012)
welcome to our whl family and i hope you find the dr you need soon feel free to browse around our site you will see there are people here withnmany symptoms that match yours that have not had a official diagnoses yet. keep a diary of your symptoms and of any questions you have for the doctors so you go to your appointments well prepared you really do need to see rhuemi good luck
The Following User Says Thank You to kim,l For This Useful Post:
And thanks for all your thoughtful responses. I have had some progress since my last post.
The clinic called me back to review my results and a new doctor was attending. He was absolutely fabulous! Right away he started showing the kind of interest in my case that I had been missing. He ordered a ton of tests and started a referral to a Rhemy for me. Feeling like I have someone on my team for the first time in years is beautiful.
It wasn't really an option to switch MD's in my little town of previous residence. Moving to Vancouver was a shot at health with a new MD. I have not worked full time in 10 years (rarely part time either) due to illness. I blamed myself thinking I was simply a weak person. It's hard not to internalize when lots of the pain is literally in your head (cluster migraines or lupus migraines)... at some point I really did start thinking it was all in my head.
But that has it's upside, I have positive signs up all around my house "Let Go and Let Grace", "be Kinder than You Think Necessary" and on and on. Those sayings start to permeate after a while, I like to change them weekly, to keep my mind fresh.
I don't have all the info yet. I know my titre ANA is >1:640 and Speckled, my WBC is 3.3 (3300) and Neutrophils is 1.8. I am still waiting for my ENA.
I haven't seen the MD again but I see that my DNA Double Strand Ab is 7 , which looks to be negative.
The C Reactive Protein (High Sensitivity) is 0.2 which I would imagine is a really good thing considering the flag is <5
Please feel free to comment about the test results since you all have personal results with this stuff ~
For more than 10 years I have had crippling migraines that fall into the cluster headache/migraine category, been very open to illness and frequently dealt with Chronic Bronchitis , found myself getting clumsier and clumsier as my speech also started to get confused. My brain seemed to become a maze that I could only navigate on good days, and on bad days I felt as though I was speaking a foreign language. This all happened in waves and was joined by episodes of overwhelming exhaustion where I couldn't get out of bed or hardly eat. Often I would get down to nothing canned or fresh left to eat, and avoid going out for a couple more days, just to keep away from the light that would tear into my optical nerve.
You know I think these diseases teach us, me anyway, to listen to my intuition. I have known something was awry since I was a teenager. I expected others to be an advocate for my health. That wasn't the case for me. Because there is a history of migraines with my mother, my health was never center stage. Even with my MD, he was my mom's DR and so he decided early on that I inherited her issues and stopped testing me. I was given a battery of drugs and each time a new health concern came up, it was treated as a side effect of one of the many meds I was on. This left me in a constant state of medication change and the fuzziness, time loss that accompanies each.
Reading all your stories have been like reading chapters of my life, or finding relatives I didn't know I had lost. I am so grateful to find people who have similar experiences ( and sorrow that you too have had them) of isolation, exhaustion, of having to become advocates of your own health and researching yourselves into what should be an honorary PHD and of course the mental anguish of chasing symptoms only to have them disappear and new ones replace them.
I've felt like I was on the outside looking in for a long time. It is so lovely to feel like I have found a little bit of my tribe, finding out I am not alone has lifted a burden off me. This as yet could turn out to be something else, but it certainly seems like lupus from all the literature and stories I have read. Information is power..Yeah!
Thanks ~ Holly
I would love to know how long did it take you to get diagnosed and how has your life changed in the years since?