New doctor

This is my first entry in this blog, which I set up to write about my life with fibromyalgia, chronic fatigue syndrome, Hashimoto’s disease, and no health insurance.  I don’t want to crowd my other “pet-themed” blog with medical issues, so I thought a second blog would be appropriate.  I want to be able to write about treatments I’ve tried, treatments which have and haven’t worked, treatments on the horizon, and general day-to-day suckiness of never knowing how I’ll feel when I get up in the morning.  This is my 10th year with the symptoms of FMS.

Before I start, a quick caveat and “cover my ass” moment:  I often self-medicate by buying medication over the Internet, and often go for years at a time without medical supervision.  I do not recommend you do this!  The reasons I’ve ended up doing this are many and varied, and I’ll write about them eventually, but under no circumstances should anything I write be construed as advice or a recommendation (unless I actually say it is one or the other).  I’ve been exceedingly grateful for the times I’ve had access to good doctors, but sometimes those opportunities are limited, and I’ve had to get by as best as can.  An example of this would be my Hashimoto’s disease/hypothyroidism:  when my endocrinologist suddenly left the country to care for his mother in South Africa, I didn’t have a doctor.  So, I used up all the Cytomel and Synthroid I had on hand, then I continued buying the same doses on the Internet.  Once a year, I ordered bloodtests online via Healthcheck USA, and then I compared the lab results to the lab results I have on file.  If I’d ever seen an anomaly I definitely would have sought out a doctor, but I generally found my TSH stayed consistent, and that was what I needed.  It was through this method I continued taking Effexor XR and Ativan as well, and I think I’ve been able to keep myself fairly stable for the past couple of years.

Unfortunately, since Flippy’s surgery, I haven’t felt very well and the extra physical labour has been tough on me.  I finally decided it was time to start seeing a doctor again, especially because someone advertising himself as a “pain management specialist” had opened an office in our neighbourhood.  I made an appointment for today, and filled out all the paperwork in advance.  I included a typewritten sheet outlining my FMS history, where I listed what doctors I’d seen and where, what I’d been diagnosed with, and what medications I’d tried.  At least two doctors I’ve been to in the past 7 years are no longer “in business” (I must be tough on them), so my medical records can be hard to dig up.  I assumed that a cover letter would help fill in gaps.  The purpose of my appointment primarly was to get refills of my Cytomel and Synthroid, to see about switching from Effexor to Cymbalta, and just to check to see if this doctor had any fibromyalgia suggestions.

The office visit was $125, payable in advance.  When I was taken to the exam room, I was told that the office required that I have an EKG, a full blood panel (TSH, liver, cholesterol, etc.), and a chest x-ray “to set a baseline”.  I knew I’d have to have bloodwork done at some point, if only to check my TSH, but I wasn’t very happy that I was being told I needed to have it done at their office.  I also didn’t like all the extras they required, just because we’re on a fixed budget.  They wanted $40 for the EKG, $70 for the chest x-ray, and $20 to collect my blood—they said the lab would bill me separately, but they didn’t know how much that bill would be.  I can tell you this—if it’s more than $105 I’ll be very angry, because that’s what the identical tests from Healthcheck USA would have cost me.  I was more or less forced to agree with what they wanted, as it was either that or leave, and I really needed my medication so I stayed.  I would have been nice if they’d told me when I made my appointment that so much extra would be required, as today’s appointment was suddenly about to cost $260, plus the lab fees, plus the costs of my medicine.

The office was very high tech, and the staff was very friendly and competent.  I saw two “medical assistants”, a physician’s assistant, and finally the doctor, but only after I’d had all my required tests done.  Unfortunately, the doctor really underwhelmed me, especially because the last few doctors I’ve had have encouraged me to speak up about my needs.  I told him that I’ve been on Effexor for the past seven years, off and on, and that I was interested in trying Cymbalta as I’d read that FMS patients have had good luck with it reducing their daily pain levels.  He said, “No, let’s just keep you on the Effexor and increase the dosage until we’ve maxed that out, and then we’ll see about trying something different.” I then explained to him that I can’t afford to “max out” a dosage of Effexor, and that the reason I go on and off the drug so frequently is because I develop tolerance to it, and can’t afford the increased dosage (at one point, I was taking $324 worth of Effexor every month).  He then reluctantly agreed to give me three months worth of Cymbalta, but then I had to insist on getting a month’s worth of Effexor, too, so I can taper down the dose so I don’t switch over “cold turkey”.  Again, he seemed a bit skeptical when I said that, which bugs me to no end because every general practitioner and internist should know that antidepressants cause bad withdrawal symptoms if they aren’t tapered.  It seems that no one ever knows but us patients.  He kept looking up information on his Blackberry, which was fine, but I was surprised that his knowledge about antidepressants was so limited.  He ended up giving a prescription for an intermediate-sized dosage of Cymbalta, not the lowest dosage, and that bothered me too—I’d prefer to be taking the lowest dose I can get away with, but I didn’t think I should keep arguing.

I then had to ask for my thyroid meds, which he was okay with, but he acted like he didn’t know what Cytomel was.  I also asked for Ativan, which helps me sleep properly (sleep is a big FMS problem), and he gave me a scrip for 30 pills.  Yippee, not.  My last doctor would give me 60 pills per month, with six months worth of refills, and that would last me for over a year.  I never take the medication every day, just when I need it, but I guess the new guy doesn’t trust me yet.

Finally, the doctor asked me what had worked for my fibromyalgia pain in the past.  I said the dirty word, “Oxycontin”, and his eyes grew wide.  He said, “We don’t want to get into giving you something like that every day, yadda, yadda, yadda...”, which I know, and I don’t want to take it every day because it makes me slightly nauseous, but it is the only thing which has ever given me full relief from pain.  I then asked him, “Are there any new treatments for FMS?”, thinking in my head about new anti-depressants being tested, medications like Provigil, etc., and his answer was “5-HTP and B12 injections.” Period.  That’s what the pain management specialist wants me to take for my Oxycontin-level pain, one 5-HTP pill per day ("whatever size they sell at the store"), and he wants me to have injections of 1cc of B12 per month, at a cost of $20 each.  I didn’t want to seem uncooperative so I agreed to the B12 shot, but they had to go get Flippy from the waiting room to make her pay the $20 before they’d do it!

The sum of the day was, I have prescriptions for 4 months of thyroid pills and 4 months of antidepressants, and a month of Ativan.  I also know my EKG is normal, my blood pressure is quite high (for me, not for an average person), and that the doctor’s x-ray machine is broken.  I feel such a let-down, I can hardly describe it.  I think it’s normal with FMS to be always hoping to find that magical person who will “fix” you, and even though I know that person doesn’t exist, I’ve found at three doctors who’ve come close.  Unfortunately, those three doctors are the ones who don’t practice anymore, or who’ve left the state, so I desperately want to find someone who’ll be proactive with me about my healthcare.  Not only is this the first doctor to try to deny my request to change antidepressants, he’s the first doctor to not give me any free samples, so it was an expensive day.  My one month of Effexor cost $108, and I don’t know what the Cymbalta will set me back.  I’ll find that out tomorrow.

Posted by on 07/12 at 08:35 PM

  1. As troubled as our health care system is.. I am so glad to live in Canada.  I can not imagine having to worry about the cost of a doctors visit, etc.  Medications.. always an expense.  I am also hypothyroid and take thyroxin once a day.

    I also understand the desire to have a doctor who understands your afflictions and has some respect for your input as well as a little empathy.  This doc.. doesn’t really sound like he cuts it.

    Posted by Simply Coll  on  07/28  at  05:05 AM

  2. I like the guaranteed care of Canada, yet worry I might get stuck with a bad doctor.  My parents live in Belleville (Ont.), and their primary care doctor is in Cobourg because no Belleville doctors were taking new patients.  Everytime I think about moving back there, I worry about finding proper care for my FMS.  Care for everything “concrete” has always been excellent in Canada for my entire family (and for me, when I lived there), but I’m concerned about getting treatment for something abstract.  Overall, I’m a big fan of the Canadian healthcare system, though.  Here in the US, when my endocrinologist wanted me to have an MRI as he wondered if I had MS, I just had to say no.  I couldn’t afford it.  In Canada, I might have to wait 6 months for it, but eventually it would be done!

    Posted by Leigh-Ann  on  07/28  at  10:36 PM
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