The doctor run-around

It's been a while since I've posted, mostly because I haven't felt well enough to sit up and type. But also because I've been stuck in another limbo. Torn between possible causes of my chronic pain. Is it Bartonella, and should I see another Lyme specialist? Or is it really something else, and should I see a neurologist?

Well, a few weeks ago, I decided to go the neurologist route. It took a full week of phone calls and bouncing around. I jumped more hoops than a tiger in a circus. All to find out that not only is the neuro route a closed door, it's a full-out slammed door in my face. Long story short, the neurologist replied back to my doctor's referral - "we don't see patients for pain."

I went through a range of emotions in a matter of minutes - anger, disbelief, frustration, confusion and more disbelief. Here I thought the majority of what neurologists do IS to treat pain??! I went back through the trail of emails from my doctor, took another look at the referral, and then the light came on in my head. Under "diagnosis," the most prominent phrase listed was "Lyme Disease." Ah ha! I thought. Another doctor afraid of dealing with this disease! This isn't the first time I've dealt with a doctor's rejection because of my illness, and probably won't be my last.

I went straight to my Lyme forums and posted my experience, in search of guidance for another neurologist, or another direction. Many patients had gone through exactly what I had. Some have had their referring doctors purposely leave off the diagnosis. One other fellow Olympia Lymie told me that NO neurologists in town are helpful. Which at least saves me from more trial and error, locally. It's so sad and frustrating that there are so many of us who are desperate for help - yet the people that can help, won't. Either because they don't know what they are doing, or because they are afraid of the politics of the disease.

I emailed my doctor back and asked what he suggests. He not-so-subtly reminded me that he's been trying to get me to see a Pain Management Specialist for months, and that I will likely run into the same thing with most neurologists. I hadn't liked his idea before, for several reasons. First of all, it's up at the Swedish Hospital in Edmonds - which is at least a 2 hour drive away. Which means more time off work, and more pain in the car, which is horrendous for me - especially with the stress of I-5 traffic. But mostly because I had tried pain management before, and everything they offered to do was a waste of my time. Physical therapy? Please! Stretching? Hurts like hell and is a temporary fix. As in "one-minute" temporary. Pills? Enough already!!

But this time, he told me that Dr. B. specializes in finding the source of the pain, in addition to pain management. Why he didn't say that before, I don't know - but it makes all the difference in the world to me. So I'm giving it a go.

The numbness in my hands and feet are getting way worse. Last night in bed, in my efforts to find some sort of position that would allow sleep - I tried lying flat on my back on my heating pad. It's been 80+ degrees, by the way, and the heating pad thing is going to have to go soon if it keeps up this way! Anyway, within the hour, both of my hands, arms, legs and feet had gone completely numb - worse than ever. The crazy thing is, within minutes of laying back on my side, the numbness dissipated very clearly.

This makes me even more certain that there is something going on with my nerves. At this point, I don't care if it's from Lyme or from a botched surgery, or something else, I just want it fixed.

So today I called to schedule an appointment with Dr. B. Of course they didn't have my referral. So it will probably take the rest of the week, at least, to get that appointment scheduled. But I have to say, it's nice to have a little bit of hope that there is still someone out there that may be able to help me.