I have "parasthesia". That is the technical term for neurological issues that cause numbness, pain and tingling in the limbs. They gave it a word because telling a patient, "I have no clue why your body is doing this" isn't very reassuring.
I've been dealing with this for a couple years now. I was referred to a neurologist who requested a slew of blood tests and an MRI. I have no insurance and no insurer in Oregon will cover me unless I'm on an employer plan, and I'm not able to work in a traditional capacity so that's not an option. I was able to finagle financial assistance for the MRI, and had that done. However, the MRI showed no lesions indicative of MS. That bloodwork that the doctor wanted done, well even without insurance there are copays and I just wasn't (and am still not) in a position to afford all of that. When I met with that Dr. to discuss the results, my concerns and my attempts at finding out what is going on, I was told, while he was doing paperwork, that the nice thing about medicine is that I was to leave it to him and I didn't need to try to practice it. Basically a pat on the head, sent me on my way with a reminder to get the bloodwork results to him before I came back. I was shocked! Had that just happened? Had a doctor actually completely ignored my fears and concerns and sent me away to do something I already told him was financially a hardship? What year was it again? Did I sound stupid, uninformed, ignorant? Did I look like a two-bit bimbo with an IQ of 75?
By the time I got to my car I was fuming. I called Gus and vented. At first he didn't understand what I was upset about, but as I explained more he got frustrated, too. So, he took it upon himself to help me find a second opinion, and a chance meeting in the line at the bank allowed him to give me that opportunity for a second opinion. That neurologist was delightful, concerned, listened to me, and admitted she didn't know what was going on. She thought that, perhaps, it could be fibromyalgia, and gave me the name of a pain specialist. I left her office without much more than I had when I went in, but what I did have was a sense of confirmation that something is going on, and comfort because someone actually listened and cared.
I spent the rest of the summer and autumn just dealing with irritating symptoms; numbness, tingling, weakness, infrequent exhaustion, and the stress of everyday life. On the bad days, when I was in pain, I contemplated calling the specialist, however I had a lingering concern as the specialist worked in the same office as the initial neurologist who had the bedside manner of a mildewed bottle brush. One day I was in such pain that I gave in and called the pain specialist. When I spoke to the receptionist I let her know my very real concern about trying to see him due to Dr. Mildew's potential skewing of my worthiness. Sure enough when she called back she said they wanted to refer me to the "experts" at OHSU, and to contact my primary care physician to get a referral.
My emotions were all over the place. Frustration, anger, fulfilled expectation of denial, hopefulness, and a fear that no one who could help me would ever believe me. Then I heard on the news about a new discovery that could potentially change the way neurological diseases are diagnosed and treated, being researched at OHSU. Yet still I hesitated. I called my Dr.'s office only to be placed on hold for 20 minutes before hanging up. Again I let more time pass, dismissing the symptoms and pain and niggling thoughts in the back of my mind. And then...
We were at the mall, Saturday, December 1st, to pick up Secret Santa gifts for two young boys and to visit Santa Claus himself. We entered through one of the big stores and as I walked I began to stumble. First my right foot, then a few steps later my left, and again my right. Gus let me hold his arm as we entered the main mall. As we walked to one of our destinations, I continued to stumble and I began to experience something truly odd; my legs began to feel like they weren't really mine, like I couldn't control them, these once loyal appendages just weren't cooperating. I could feel them with my hands and the muscles felt tight when I tried to rub them. At our destination I asked Gus to take the boys in while I rested on a bench. I tried to not focus on them, the stranger's legs attached where mine should be. I looked at Facebook, checked the news, re-read some texts, checked email, and then began to look up these confounding symptoms. *sigh* I knew exactly what I would read, but the sadist in me just had to check.
Gus and the boys came to collect me and I continued to try to walk. Eventually I broke down, crying and trying to hide my fear and pain and embarrassment from the boys. I could not walk any further. Gus helped me to another bench, the boys enjoyed a kiosk of ridiculously overpriced hats a couple feet away from my bench, and Gus went to get a wheelchair for me. A wheelchair. I'm 37. I've only recently resigned myself to my mental/emotional issues, I never agreed to physical, too!
Once my chariot arrived it was surprisingly easy to navigate as a family. Except for Matthew. I think we ran over his foot three or four times. Well, he's gotta learn to learn to be observant somehow. The boys were still able to visit Santa and we all enjoyed a Jamba Juice before leaving. When we went to Target I got one of those little scooter things. Not too bad, I must say, except when you need to reverse. The beeper on those scooter things is LOUD, and every time I had to back up I was sure than every shopper within a 10 isle radius was resenting that horrid beep and wondering what moron couldn't even maneuver through the store (I'd go forward and then down the next isle to avoid backing up at every opportunity).
Sunday morning arrived and I was determined to be able to go to church. I did go, and enjoyed lunch afterward at Wendy's and then more Christmas shopping. My legs weren't entirely reliable, and I was grateful for the shopping cart for stability. But I did it. And today I've been walking all around the house as I've cared for 5 individual kids and the house as well.
But I did call my regular doctor's office today, for that referral to OHSU. I can't brush that kind of "attack" aside anymore. I've had a couple now, and I've got to get to the bottom of this.
If you could please say a prayer for me for strength and for the doctors for wisdom, I'd appreciate it. I don't know what tomorrow holds, or if my legs or arms will let me do what I want when tomorrow gets here, but I have to find out what this is and how to treat it. Thanks.