Neurologically Speaking...

Off I went to the local Neurologist... Just after the new year (welcome to 2011). Not that we have only one in this city of 80,000+ people, but she was my local Neuro... She didn't like the way my knees reacted, or didn't react, to be precise–so she ordered an MRI of my lower back. Mind you, she did not even begin to approach my symptoms that I had come to her about.

There wasn't much telling this doc and it only took me three phone calls to figure this out. I still wasn't understanding just what this MRI was going to prove, given my current symptomology. Hubby and I both knew this problem was neurological, and were even thinking it could be MS, so we asked, three times, for a full MRI instead of just looking at my lower back. No, no, and no.

The MRI went as planned. And low and behold, what they found was: nothing. So, during the follow-up visit, she told me that since I had already been through the ringer, er, EMG testing, with the local docs, she wanted to send me to a Neuromuscular Specialist up at the big city's state-of-the-science teaching hospital for a more in-depth EMG and possibly other testing. Well, at least we were getting somewhere... Our vehicle was soon to have the miles to prove it.

Now, something amazing happened at this point in time. A dear friend of mine (from California) had seen the documentary Under Our Skin and just happened to be over for a visit and mentioned Lyme Disease to me. Right away, I told her that I had been tested, and I was negative. Little did I know... I was extremely closed off on the subject of Lyme, as I just "knew" (just like the doctors) that I didn't have it.

On my life went, waiting more than 4 months for my specialist EMG appointment, and in the meantime, my symptoms grew. I had been bogged down with the aching, burning muscles, ridiculous gait, no stamina to even walk briskly even up my stairs, extremely, painfully cold feet and hands, and now new things... I had begun to forget things more and more. When I would type, which I did often, my fingers stumbled dumbly over the keys, like a physical dyslexia of sorts. It was ridiculous. And the worst part was that every time I stood up, I began to find myself dizzier and dizzier. No fun, especially when one is caring for three children under the age of 10.

No "Rheum" For Me

Onto the Rheumie! His first response, after I go through my symptoms is, "I think this is neurological." So, instead of sending me to a Neurologist, he orders an EMG, which is a neurological test. I am happy with this. My second mistake. During the long waiting period for this EMG (more on that later) he puts me on Neurontin, Tramadol, and Flexeril for pain and muscle spasms, which I had begun experiencing regularly. Oh, and, my third mistake, I cancelled the Neurologist appointment because I assumed a Rheumatologist knew what he was doing ordering neurological tests.

Oh, he felt around at the pressure points that would indicate Fibromyalgia, and yes, they were tender. My whole body feels the way they do. But he looked me in the eye and told me that I didn't have Fibro. 

The EMG, done by a new doc–a Neurologist–was painful, to say the least. I thought I was tough. But when electrified needles are poked into your muscle tissue that is already very sore and extremely sensitive, things happen. One needle hit right onto a nerve in my right quad. All the pain I had felt over the last several months was amplified and packed into one moment. Things happened. Involuntary tears. Sobbing. Bleeding at the site. Gasps for breath between sobs. Wow. I've had six surgeries–three of which were C-sections. Nothing was as painful as this. I've even had a fingernail ripped out. Well, maybe that was worse because that pain lasted longer. But that's the only reason I would categorize that as worse than that one needle.

Waiting... waiting...

RESULTS! Rheumie comes in, and reports the findings: "you're normal. Let's play around with medicine dosages. Then come back and see me in four weeks." Oh, that's gonna fix my problem. Add more milligrams of pain meds. I will be cured. But I say okay. My fourth mistake. One nice thing here was that he believed me about my pain and issued a 6-month temporary disabled tag for my car. Six weeks go by... Finally in to see the Rheumie.

Dr. Rheumie waltzes in, acting as if he didn't know me. At all. He asks, "what are your primary concerns/issues?" I think to myself, "REALLY?!?!?!" So I remind him. He asks, "You're seeing Dr. So-and-so also, right?" Wow. "Dr. Who? No. I'm not seeing this So-and-so."

"Oh, sorry. I don't have your file." Mental GASP! Mental I'm falling onto the floor in astonishment. "Well, I think this is neurological, so I'm going to send you to a Neurologist." Mental jaw drop and seizure!!!


My fifth mistake... I never once questioned him. I never said, "You told me this at our first appointment, and could have saved me the time, pain, and money by sending me right away! I want a refund!!!!!"

Internally speaking...

Well, the days went on... I continued in my whirlwind of symptoms while preparing to put doctors at ease from their worries of "how will I afford my Jag payment this month?"

My first visit, after my chiropractor was to my internist. This was actually my first visit with her, as I didn't have a "regular" doctor yet. I never needed one. I moved here, found a gynecologist and a chiropractor. That's all I ever needed... Until, well, you know. She, of course, sent me to the vampires for massive amounts of tests: Thyroid, Vitamins B12 and D, Iron, Ferritin, CPK, LDH, urinalysis. All things point to normal. Her reply? "Now Fibromyalgia is not a diagnosis of exclusion, but seeing as I can't find anything else wrong with you, I think you have Fibromyalgia. I'm going to send you to a Rheumatologist for a consultation. And in the meantime, please take this prescription for Lyrica. It's for Fibromyalgia and should help you feel better." (She possibly continued under her breath... "Oh, it's habit-forming and only works when it gets built up in your system. Have fun with addiction." Wait, maybe that was my thought after reading up on Lyrica.)

Go ahead... Read her reply again. I know, it's comical. I'll wait.

While waiting for my Rheumatologist appointment, I began to strongly feel that my problems were neurological, so I called my internist to ask for a change in plans. She agreed to allow the Neurologist appointment, BUT I had to keep my Rheumatologist appointment as well. ??? Okay. Fine. My first mistake. Well, I took the Lyrica for a few weeks, and then stopped around the end of October for two reasons. One, if I was going to see a new specialist, I wanted my symptoms to be fresh, so I could explain what was happening. Two, my husband and I were taking a cruise to the Bahamas to celebrate our ten years of marriage over Halloween weekend (coincidence--our anniversary is in June; this is when the cruise line could fit our free cruise in). I wanted to have freedom to have a little fun on the trip.