Posted 4/3/2015 7:23 AM (GMT -7)
Thanks for checking up on me Gretchen, to put it mildly....it was a disaster. It was the WORST experience I EVER had with a doctor. And I've dealt with a lot in my 45 years.
To sum it up, she basically chastised me for believing I have chronic lyme, despite providing her with my proof. We actually argued about it. Her bedside manner aside, I felt like I was on trial for coming to a neurologist with a chronic Lyme diagnosis.
She said "if you have Lyme, then why are you here?" I said that ALL of my symptoms are neurological in nature, and when I got to the point of using a cane, and potentially a wheelchair, I felt it was necessary for another opinion. If you are unwilling to accept that, I"ll be on my way gladly."
She said IF it WAS MS, after my last "flare" in December and the MRI I had during that flare, it would have showed a lesion. So she felt it wasn't MS because of that, AND, IF she would request another MRI she would have nothing to compare it to, because the first MRI was clear. She also said that there is no way my insurance company would approve another MRI with a lyme diagnosis.
I just wanted to get a neurological exam and get the hell out of there, just so see if there was anything "off" but at the point, her ability to remain objective was comprised, and I should have left. After the "exam" she said I "passed."
She then went on to diagnosis me with migraines and depression, because this is clearly connected to my inability to walk. (sarcasm). When I said that I had some lumbar issues that could be? the reason for the leg weakness, she said that doesn't make sense, then why would you have the dizziness??" I retorted with the same rational, that IF I do have depression and migraines, why cant I walk??"
So, she wrote me a script for anti depressants, told me to up my metoprolol (for high blood pressure), keep a log of migraines (which I never once had OR said I had) and come back in a month and then "Maybe" she would do a lumbar puncture for lyme (PCR) test.
Despite how disturbing this was, it was good. I knew I could be in store for some opposition to a Lyme diagnosis, but I certainly didn't expect hostility. It actually strengthened my resolve to keep advocating for my health. It may very well be Lyme, and I'll just have to accept that - it's just that the inability to walk I am not willing to brush under the rug until I explore other illnesses, like you said, MS is a disease of exclusion, and sometimes so is Lyme.
I think my next option is to see a chiropractor, and have him look at my lumbar MRI, and I'm sure he'll do some xrays as well. At least I might get some temporary relief with him.
Lastly, someone at work has MS, who was outraged at my experience yesterday, called her neuro today to see is he would be willing to consult with a lyme patient and he said he has lyme patients, which is encouraging. So when I get the energy to try again with a neuro, I'll probably go see him.
For now, I'm just exhausted physically and mentally and I'm going to try to enjoy my weekend for once, even if it's on the couch. lol