Next stop, my neurologist (who I haven’t seen since being diagnosed with peripheral neuropathy in my legs years ago, except for one time last year when the horrible headaches came and went – and I had my first brain MRI which was, you guessed it, normal). Everyone assumed the peripheral neuropathy was from a disc problem in my back, so nothing was really done about it except the usual, “If it gets worse, come back” thing.
He listened to me, then had me walk back and forth in the exam room. He expressed surprise that my walking had changed for the worse (I hadn’t noticed) since he last saw me. Then he looked at my eyes.
“Well, no wonder you’re seeing double – you can’t move your right eye upwards very much.”
Side note #3: The ophthalmologist missed that??
He ordered tests. He said multiple sclerosis didn’t even make his “top 10 list”.
So…you guessed it…12 tubes of blood and a 2-hr glucose tolerance test later, the tests came back normal.
I don’t have myasthenia gravis, diabetes, Lyme disease, syphillis (!!), a thyroid problem, or any autoimmune disease – and my blood panels were normal. Since my endocrinologist has previously ruled out anything abnormal besides a Vitamin D deficiency (since corrected), that’s 2 specialists who have come up empty.
Meanwhile…my eyesight is getting worse. There are days when the diplopia is so bad that I can’t see well even with one eye closed (my go-to coping mechanism).
The flushing is also getting worse – remember that? Facial flushing, with head sweating so severe it’s embarrassing if I happen to be out and about. Seems to happen if I stand too long, or if I stand at all and the weather is hot. I don’t even wear a coat unless it’s very cold outside. And I don’t wear one inside stores.
Likewise, the leg weakness is much worse. I have to sit down every few minutes if I am walking anywhere (even using a cane) because my legs are too weak to continue. I have had knee buckling when standing too long. I can’t really afford to start to fall, because I can’t right myself like I used to when I was younger (“I’ve fallen, and I can’t get up!” is a real thing for me now).
Side note #4: I went to Memphis over Christmas, to meet my baby granddaughter, and to my horror/shame I had to use wheelchairs and their pushers at every airport I went to. I had to stop eating 2 days before my flights in order to avoid an unpleasant incident (which I won’t explain here, but suffice to say it’s a random thing and it’s gross).
My blood pressure spikes – usually when I stand up too long – but in general it’s normal. The nausea is ever-present, and since the anti-nausea meds don’t work, I just stop eating when it gets bad. And I haven’t lost a bit of weight, which is maddening.
I’ve lost muscle tone everywhere. Yes, I know that can be age, but it’s really drastic (at least to me). I can’t brush my hair without my arms getting tired. My grip, which has never been that great, is worse, too. I am fatigued a lot – not sleepy, not “depressed-gotta-sleep”, just flat-out tired. I also have insomnia, so I get fatigued but I can’t sleep. Grrr.
I have random muscle cramping in my legs and flank (you know how you twist your torso in order to reach for something? That causes a charleyhorse in my side muscle, every time, ouch!).
I lose my balance at random times. I get lightheaded when I sit up or get out of bed, also at random times.
I have eye muscle pain, and last night my right eye started twitching. Which normally wouldn’t be a big deal – everyone gets them – except it’s happening in my “bad” eye.
I was willing to ignore a lot of this, because the doctors just kept saying, “We don’t know what’s wrong.” One even told me that I might just have to live with the symptoms “because we may never know what’s wrong”.
Ok. I was willing to do that, until the double vision. It never goes away. It’s a reminder that something just isn’t right. And the airport experience. That was upsetting to me. Until you lose your independence that way, it’s hard to understand why it’s such a big deal.