Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Some kind of a sick joke.

It's been a month since my test came back showing evidence of probable porphyria. Since then, my doc has claimed to be "working on it" but not doing anything about it.

Today I had a phone appointment with him, and had Glen right there with me, since I didn't seem to have any luck with him last time.

Long story short, my doc said since the provincial govt had blown its wad for the health care system for the next few months, he CANNOT refer me to anyone, and he CANNOT run anymore bloodwork/do any further testing to see if this is a clear-cut case of porphyria, and since I don't have a firm diagnosis, he won't treat me for it either.

His advice? Wait.
And about my nerve pain spreading? Morphine.
What if it's permanent? Dunno.

Awesome.

All I want is a PBG deaminase bloodtest run.

But nope.

I think Glen may have assault charges laid against him by the end of the day.

What kind of a health care system is this? We contemplated sitting in the ER/walk-in clinic to talk to another doc, but they're turning away people (unless you're on your deathbed) due to overwhelming cases of flu. I could scream at the top of my lungs, and they'd just call security.

It shouldn't have to be this hard to get healthcare in CANADA. It's getting worse than a third world country. And I'm PAYING for a private clinic here, so what's the public system like??

So, I guess I have to go to the US just to order my own bloodwork. I can't even really go to a porphyria spec./hematologist without some preliminary bloodwork.

Anyone know of a good hematologist in the US?

Well Megan, I can't offer anything of value, it must be awful when finance outweighs need.......but then perhaps that is the modern world, money more important than life.


So not to depress you more I shall tell you ajoke.....errr well now let me see.....a joke. wellllll


cripes, I can't think of a joke, but, there was an interesting report in the newspaper today about two builders who did work for government on public buildings but it was so sub standard it was dangerous,so they were sent to jail however they both escaped when the front of the prison fell down!!!!!!

Hey Megan! I am very sorry to hear that you are getting no help at all with your new dx. I wish you the best of luck. Sending hugs to you and big pats on the back to Glen for being such a suportive partner in all this.


Anna

Wow Megan, this is unbelievable.

Are all of your doctors essentially out of work in the Province for the next 3 months?? This can't be. Are all of the provincial laboratories closed too? No, I just can't fathom how this can be true, that doctor has to be wrong. Do you have some law in Alberta that precludes running a deficit? At the very least, are there no private labs?

I've been trying to find out if this is even legal but haven't come up with much that would be helpful.

This bit from the Canada Health Act seems to suggest that they can actually get away with it. I would write to your members of Provincial and Fed parliament (and would never vote for them again).

"5. Accessibility (section 12)
The intent of the accessibility criterion is to ensure insured persons in a province or territory have reasonable access to insured hospital, medical and surgical-dental services on uniform terms and conditions, unprecluded or unimpeded, either directly or indirectly, by charges (user charges or extra-billing) or other means (e.g., discrimination on the basis of age, health status or financial circumstances). In addition, the health care insurance plans of the province or territory must provide:

* reasonable compensation to physicians and dentists for all the insured health services they provide; and
* payment to hospitals to cover the cost of insured health services.

Reasonable access in terms of physical availability of medically necessary services has been interpreted under the Act using the "where and as available" rule. Thus, residents of a province or territory are entitled to have access on uniform terms and conditions to insured health services at the setting "where" the services are provided and "as" the services are available in that setting."

I am worried, as no doubt you are, about waiting that long considering your set of health concerns.

I wish so much this wasn't happening Megan.

Dear Lord, Megan. I am appalled. Good for Glen, hope that you can sort out this mess 'somehow'. Sending positive thoughts yr way, meanwhile, take care hon.

Molly C

Hi Megan, your kidding are you not. Obviously your idiot doctor knows nothing about Porphyria. A suggestion though is to eat high carbohydrates, and glucose (eat lots of icecream :o) ).

What about seeing an Naturalpath/Medical doctor if there is one in your area. Dr. D. referred me to my Rheumy. She is the one referring me to the Porphyria right at the hospital there and the MS Clinics. She is not testing my blood for porphyria (even though they take six tubes everytime your there), she figure that the Porphyria doctor who is world renouned would want to run her own blood work.

I haven't heard of an appointment for myself either, but I am expecting an appointment date, any day. I have an MRI of my brain scheduled for April. It would not surprise me that they put off refarrals, to the MS/Porphyria clinics until after the MRI has been completed.

Megan, I am sending you many cyber hugs

Gerri

Thanks guys, for the responses.
I think I'll hop a plane back to BC to visit my parents - maybe my parents' GP (who is currently very good at testing my mom for porphyria and who has seen it in a few of her patients) will agree to run some stuff, and then Alberta Health will get billed for it. Not sure whether BC Med will get paid for it though... oh dear.
Mig, thanks for the info - that will come in handy. I recently heard a story on the news that said similar kind of stuff - we're kind of stuck right now. Last year, Alberta decided they were so rich, they did away with all the health plan fees. Free for all! Kinda backfired - now they don't have enough $ to sustain the province. I'm sure they'll blame h1n1 for it. lol Nevermind the poor planning and lack of foresight. There are no private labs that I can find in Alberta yet... but I'll keep looking. My doctor is still working, he's just not referring me because he said no one is able to take me. I have no idea if there is any truth in anything he says, or if it's just a way to make me go away for awhile. I'm so confused.
Gerri - porphyrins are detected in urine - usually only in an acute phase, and I'm not in an acute phase - just general sort of intense nerve pain and barfing every day. Not nearly as bad as the acute stuff. Unless, like you said, I stop eating - that seemed to bring on an attack, but considering last time that happened, I was told it's all in my head, so I don't want to try it again. When you're in between acute attacks, sometimes blood tests will show decreased PBG deaminase (the enzyme responsible for helping to clear out porphyrins, hence elevated porphyrins... I think). So, that's why I wanted that blood test run - it has a high false negative rate, but if it did show something abnormal, it would help my case and maybe get me into a hematologist here. Also, I only get to see my rheumatologist once a year, so I could be waiting a long time for him to refer me to a hematologist too.
Glen asked my doc to just refer us to a good porphyria centre in the US for a diagnosis, and my doc, again, just said no, he didn't agree with that either. Why? Because if it turns out the centre discovers it not to be porphyria after all, then that centre wouldn't be able to treat me.
Yeaahhh... cuz ruling this out would be a TOTAL waste of time. Logic is just horrible. Much better just to sit here for a few months and see what happens, doc thinks.
Must run. Need to tear out my hair (what hair I have left, anyway.)
Thanks again for the support, people. I shudder to think where I'd be without this place!

Careful Alan, you may have me calling you a clot too. hehe

And now you owe me a joke! I'm holding you to it.

AHAHHAhaa this an even better joke now...

Just talked with my radiology booking place - my gastric emptying study has been - you guessed it - cancelled!

Due to lack of funding.

What a zoo.

oh wow. I'm so glad I live down here.
holy cripes. When are you coming down here again? I'm inclined to go to Phoenix and start interviewing doctors for you so you don't have to waste any more time with this awful . . . grr . . .