Previously in Diagnosis Part 1 I discussed what lead me to get some medical attention and help because the bottoms of my feet were tingling. Diagnosis Part 2 begins now.
It’s amazing to me now that my first experiences with Neurologists aren’t as clear in my memory as they once were. Why? Probably because it’s been almost 10 years. I’m sure a lot of it is because so much of those experiences were so painfully traumatic to me and so frustrating to remember that I have learned to let them go and try to block them out a bit. So let’s see what I come up with.
The first Neurologist I did see was a woman who spent a few minutes with me doing a “Work Up” of sorts and checking me out neurologically. I’m sure she checked out my balance a bit and checked my reflexes and my sense of touch. I do remember a bit of discussion regarding my symptoms and why I was there. She thought perhaps I had something called Peripheral Neuropathy (so she didn’t completely ignore me) and that I could try a medication if I wanted. (Just what I wanted…medication). She asked me if I had ever heard of or tried something called Neurontin and I told her no. She suggested I take it but that it was very serious that I take it at night right before I go to bed because you know, some of her patients could get “pretty drowsy” from it. (Let’s just say I did try taking it and it did nothing for the tingling but first it would make me “spin” before I fell asleep, then it would knock me out and I would have a ridiculously hard time waking up from it. Not my idea of a good time.) And then she said she MIGHT want to do a few tests on me but she would have to check with my HMO regarding approvals and referrals, etc. (Hmm. The HMO again. I cringe these days every time I even hear, write, say or see those letters. Yes, I’m cringing a bit now but it’s worth it to tell the story.) And so I checked with her in a few days to see if she had received approvals for these “tests” and she blew me aside and said that she wasn’t really even sure I needed them ANYWAY because well, only OLDER people really needed these tests. And if I recall correctly she mentioned something about how it was really only affecting my right side right (completely unsure of what I was even dealing with anyway)? I responded with, “No. It’s both bottoms of my feet” and really began feeling disillusioned already with the process. (That was just the beginning…)
Some time later, I did hear from her that she was to be unavailable but that if I REALLY WANTED TO (sure lady, if I really wanted to do a medical test) then she did get approval for me to have a Nerve Conduction test done (really not sure of the official name but that’s how I remember it) on my legs and feet and that her partner (the 2nd Neurologist in my path to Diagnosis) would perform the test on me. And now that I think of it, there were no other tests I had done by that office even though she said she would look into some “tests” for me.
And so the AWFUL NERVE CONDUCTION TEST happened. It really was awful. To this day, after so many medical tests I have had, it is still one of the worst I have been through. It basically consisted of electrocuting my legs and feet to see how my nerves responded. Not that I would know what this test even really was or what was really happening because I hadn’t learned yet to speak up and ask lots and lots of questions about what was happening to me. It’s not like the doctor was going to speak up or anything. That would be silly. I can remember feeling very ALONE while laying there on the table wearing one of those “gowns” and the Neurologist was in the room with me and doing all these things to me but he barely even talked to me or said anything. He was MR. NO PERSONALITY. I will call him that from now on if needed because I’d like to call him many other not-so-nice things. He plays a part in my Story of Diagnosis big time.
Once the AWFUL NERVE CONDUCTION TEST was over he didn’t really even say much but that he was all done and was going to send me out the door with not even really a peep. Om, no. Not cool. I think that’s where I started learning I needed to have MY OWN VOICE with this medical stuff. I swallowed my anxiety and I asked, “So how did it go?”. And he muttered something about how it was fine and he did me the FAVOR of telling me he didn’t find anything and EVERYTHING WAS OK. I specifically remember that because as you all know now, EVERYTHING WAS NOT OK. Anyway, back to the story, I said something like, “OH. So why do you think I have tingling on the bottom of my feet”? And he shrugged it off (never really looking at me directly) and said not to worry and that I was young and I was going to be ok.
And THAT WAS THAT. I mean, I was 25 years old and that is the most common age (I found out much later) to be diagnosed with multiple sclerosis. Why would we ever pay attention to that obvious age? How strange of me. I was CLEARLY young and healthy. It’s normal to feel tingling. Isn’t that what you all feel all the time? Tingling must all be in my head right? There could be no other answer. OH WELL.
**Interesting little side anecdotes: I never did see the 1st Neurologist again. That is really okay because she was NO HELP at all. And to really make it interesting, I mentioned this woman (didn’t even remember her name) to my current Neurologist I have now and all I had to do was tell him where her office was and who her partner was (2nd Neurologist who blew me off) and he knew who she was and said he believed she disappeared somewhere in Texas and no one knows where she is. It was so odd to find that out because he is the only doctor I’ve had since her who was familiar with who she was…**
And thus is the next installment of the Diagnosis Saga. I will write Diagnosis Part 3 as soon as I feel up to it. Sharing this story is very helpful yet very draining.
I gotta go decompress…
My goodness, Nahleen… Your diagnosis story makes me sad. I’ve been to the doctor before when I knew something wasn’t right. I knew it, but I left without asking questions about what the problem could be. Ignoring symptoms because I was embarrassed that I had wasted his time with my hypochondria, only to find out later that I was correct. What you are sharing is so important. We know our own bodies, and there shouldn’t be shame associated with trying to figure out why it’s not working like it should. Your story is so relatable, even though I don’t have a chronic disorder. Thank you for sharing. It makes it easier for those of us who read it to ask questions, and to expect answers. You rock, Nahleen!