Monday, April 11, 2011

Update 4.11.11 - New Rheumatologist

Today I met the new Rheumatologist.  I don’t know how else to describe how I’m feeling about it other than, “shocked.”  Not necessarily in a bad way; I think that my brain is just completely overloaded.  
I walked in to the appointment ready to present him with my Mayo plan and my past treatment, which I did.  I explained that I fully believe in the Fibromyalgia diagnosis and that the FM Clinic was very enlightening; I wanted to begin working on their plan, take the drug that they recommended and begin weaning off of my current “Fibro” drug, Trazadone.  
I wouldn’t want a doctor who was a pushover; I would choose a doctor who had strong beliefs about their practice and who was passionate about medicine.  I didn’t however, expect this doctor to be one of them.  He is extremely confident.  I can’t decide if this is annoying or comforting.  

He mentioned that he just presented at a conference on Polymyositis (impressive).  When I mentioned that I had pictures of my hands in a flare, he got giddy and asked if I would bring them in.  He asked me what source brought me to see him; I answered, “Minneapolis/St. Paul Magazine” (Top Doctors Issue).  He replied, “I pay them to put me in there... I’m kidding!”  I didn’t think that was funny.
In a nutshell, he challenged me.  That is a totally new experience for me.  I will be starting on Neurontin which is an anti-convulsion medication that is also used to calm overly active nerves (linked to the nervous system).  It aids in pain relief and can help with sleep.  Neurontin is a sibling to Lyrica.  
I will then slowly wean off of the Trazadone - an old-timey antidepressant that proved ineffective; however was found to successfully balance serotonin levels in a way that combats Fibromyalgia and aids in sleep.  Not quite doing the trick for me though.
Eventually, we will also taper down the Tramadol (pain medication).  Until that time, he instructed me to take one Tylenol with each dose.  His secret pain weapon.  I later learned from the Pharmacist at Walgreens that Tramadol was actually intended to pair with Acetaminophen, but since insurance doesn’t cover it, they don’t advertise this beneficial pairing.  FYI.
Next step (this is where things got weird), I head in to have a cystoscopy (bladder screening that sounds awful) because he thinks that the root of my Fibro is that I may have a birth defect called Interstitial Cystitis, aka tiny bladder due to scar tissue continuously forming on the bladder wall.  He is gung-ho on this ever since a Fibro patient of his 35 years ago had it and was miraculously cured once treated.
His theory is that since I wake up often because I have to pee, that I might have this tiny bladder problem.  Since I wake up all the time, I don’t get a good night’s sleep which is a common cause for Fibromyalgia.  In fact!  He didn’t want to make any changes to my medication until after this bladder study.  That’s where the newly assertive/aggressive Maren entered and put the kibosh on that.  I said, “I might not get in to this new doctor for another 2 months.  I need to work on reducing my pain and start to sleep better NOW.  If there’s something wrong with my bladder and fixing that can magically cure me of Fibro, THEN we can adjust medications at that time.”  I won.  Thank God.
Honestly, the whole bladder theory sounds like a bunch of shit to me.  Three of the medications that I take cause dry mouth (we’re talking, stranded-in-the-middle-of-the-desert-thirst 24 hours a day) and so I seriously drink about a gallon of water a day.  Constantly.  If he’s right, I will fall out of my chair right in front of him.  Whatever, check my damn bladder.  It’s practically the only thing left that hasn’t been poked and prodded at. 
He did convince me to compromise on the Neurontin as opposed to Lyrica though, simply because he didn’t think that my insurance would cover it.  I panicked about this at first, until I got home and reviewed my notes from my FIbro Doctor visit... oh thank goodness, I had written that Lyrica/Neurontin were one in the same.  I recall that the other Fibromyalgia medications didn’t work with Methotrexate (my Dermatomyositis drug), so I was really paranoid.  I practically interrogated the Walgreens Pharmacist Jack-Bauer-style on whether any of my many medications would interact with the Neurontin.  Taking as much medication as I do really freaks me out; enough in fact, to remind Brad at night to check to see if I’m breathing if he wakes up at all.
My assignment is to have my medical records sent to him from my previous Rheumatologist and from Mayo.  I go back to see him in a month.  I am praying to God that this medication works along with my Fibro Plan from Mayo so that somehow I won’t have to do the bladder thing.  I just Goggled it; it's worse than I thought!  shudder.  

It might not sound like it, but I am super pumped about trying out the Neurontin in conjunction with my Fibro Plan from Mayo.  Brad and I did the stretches together last night and it felt great to move.  I felt so happy afterwards; the first steps to getting back to ME!
Wednesday I have my gum surgery.  I will probably be in a pissy mood, so perhaps I may wait a few days to let you know how it went!  Haaha!
Tah tah for now,

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