I’ll run this past you, as briefly as I can.
Background: I’m a 56 year old female who was born and raised in New Jersey. I was married 25 years, raised two great kids, got divorced, and now live with a wonderful man outside Yellowstone National Park in Wyoming.
In grade or high school, back when platform shoes were popular, a doctor noticed my right shoe was worn down nearly an inch more than the left. He measured my legs and then told me “pick your feet up!”
Fast forward to 1987, after the birth of my second child. His was a difficult birth that probably should have been a C-section. When the epidural wore off, my right leg remained numb. It progressed to my right arm, and the nurses said I must be holding the baby wrong. (Note I said *second* baby...)
The weirdness faded, but returned later (months? A year? Don’t recall) They suspected perhaps I’d had a stroke from the difficult delivery, and ordered an MRI, which they said was normal. The symptoms faded again, but I had a mild limp now.
I had (and still have) chronic fatigue. One doctor blamed Epstein-Barr, as I had had mono in college. I also have heat intolerance; enough that one doctor wrote a note to the electric company which gave me more baseline (lower rate) kilowatt hours than standard, which allowed me to run the air conditioning more without affecting the bill too much. (In Los Angeles electricity is expensive, and A/C is used nearly year round.)
More problems in 1993, and another MRI. In that one, no lesions were found, but a small benign brain tumor was. (Good job, first radiographer! It was plainly present in the first one!) So that was removed. It was by my pituitary gland/optic nerve and unrelated to symptoms.
This pattern of weird symptoms followed by an MRI and occasional spinal tap continued for years. I also had and continue to have twitches and fasculations and other odd things like that. Each ‘attack’ left me a bit worse; I ended up using a cane because of foot drop and spasticity, and then forearm crutches, and lost my job, and got depressed, but time and again, the first suspicion was always MS, until I was tested. Only one doctor looked further, and tested me for all kinds of things, including tropical diseases and Lyme and other mimics. I was living in Los Angeles for awhile, and was so hopeful when I got an appointment with the head neurosurgeon at UCLA. He patronized me and told me it was “a KIND of MS, and to go home and try to have a good life.” I went out to my car and bawled.
I continued on a slow decline with ‘attacks’ that, when at their peak, would screw up my fine motor skills and speech. At times my legs felt like they weren’t mine, and I had to recite “left, right, left “ in my head when I walked. They’d spasm so bad I’d involuntarily squat. I also had kidney infections a few times, and more frequent than normal bladder infections. I suffered from anxiety attacks for several years, and depression, too. I was only recently diagnosed with adult ADD.
I got where standing became very difficult, and an MRI revealed stenosis. I hopefully asked if that was my problem, but it wasn’t (and wouldn’t have explained the other symptoms) I had surgery to repair it.
My frustration and anger ended up destroying my marriage as I felt like a ball and chain. I gained weight and a bad attitude.
I had good days and bad, depending on what I was doing I could occasionally leave my cane at home for shorter trips to town. Then, for no apparent reason, I had a long string of ‘good days,’ so long in fact that I started walking all the time, so happy I could again. Not perfect, but I was so happy about it, that whatever it was, was leaving me alone, that I planned to finally take an adventure I figured was lost forever: walking from the east to the west coast of the US. I made 1700 miles before my back gave out. My legs had some jerkiness and spasticity but they weren’t the problem that made me sadly have to quit in mid Wisconsin. (I learned how to ride a motorcycle and started the trip over three years later, riding coast to coast.. I have written quite a long book about it that is nearly ready for publication.)
My back is awful now but can’t be fixed, the pounding on the pavement at my age (50 at the time) aggravated it and accelerated degenerative disk disease.
So, the worst I’d been, as far as MS symptoms, for years, was some wonky walking, residual weird leg symptoms, besides the fatigue and heat issues.
Until early October, that is. I bent over from a sitting position and got extremely dizzy. Even when holding perfectly still, like vegging on couch watching TV, I’d suddenly grab on like I was going to fall. I went to the ER and they found nothing odd except slight derivations in my ECG and blood pressure. They ruled out benign vertigo. My doctor sent me to physical therapy and and they too ruled it out. (Besides normal appearing ear canal, they do positioning exercises that should have made me dizzy if it was vestibular, in my ears and balance stuff).
I have not seen a neurologist yet, but will Monday. The dizziness worsens as the evening progresses, so badly that I have nearly fallen several times, I have run into furniture and doorways and only kept from falling a couple times because there was a couch nearby that I could drop my arse on.
My legs have been spastic again, and hurt from it.
I did some neurological tests at home, like standing with my feet together and closing my eyes... yeah not a good idea, I nearly fell each time. Tandem gait, eyes open or closed, another fail.
I will be bringing a few doctors notes from a few different doctors; a couple had checked MS as a diagnosis but never did so “officially,” one wrote “benign MS” and another wrote “progressive relapsing remitting demyelinating disease.”
My problem has been that all the doctors I have been to immediately suspect MS, then run tests like an MRI or spinal tap, but once they see those are clear, they quit looking, like I’m making it up. I would ask, okay, if it’s not MS, then what IS it?” but they’d say “Next!” and that was it. No one looked further. The only good doctor I had did specific blood tests that looked for autoimmune antibodies, or indicators, and found them, but once sent to the neurologist the pattern of ”looks like MS but it’s not so go home.” I also had abnormalities in nerve conduction studies, but no explanation was given.
I am dreading the neurologist appointment because I fear that he’ll blow me off and I’ll blow him away. I know that 5% of people with MS have no visible lesions or bands; and I don’t know why it’s so far fetched that I’m not one of them. I spent decades reading medical journals and about MS differential diagnoses, and the only disease or syndrome that I fit in is MS. Some are semi similar, like CIPD, but I’ve never heard a doctor even mention that.
I seriously can’t go through this again. I was so glad when the symptoms retreated, and didn’t care why they did or what had caused them, and now I am again facing a complicated issue. I live in a small town in Wyoming and the medical care here is nothing like I had access to in California, so I don’t have a lot of faith that this dude will know what to do with me. I am sick of staggering around like a drunk; I don’t even go out anymore, stores are difficult because of both the fluorescent lights and having to look around and turn my head or eyes. If I went to a bar I’d probably get cut off before I ordered my first drink!
I am going to write a brief timeline for this neurologist, and after he examines me I’ll give it to him so he’ll have a better idea of my background and that of this mystery disease.
(I never knew what to tell people when they’d ask why I used a cane, so I found an archaic old word that means ‘an abnormal body condition’ that doctors used back a hundred years ago or so, I guess to describe something they couldn’t put a finger on exactly... like me. The word is Dyscrasy. )
So, I’m not sure how this will play out, but I am going to explode if I’m poopooed and shooed away as a bored and lonely hypochondriac. Why would anyone make this crap up? I used to hike and horseback ride and such. Even with my awful back, at least I had been able to walk a mile or so up until this dizziness started, now I can’t even do that.
Well that wasn’t very brief but I figure you all know that something as complicated as a neurological issue with no diagnosis isn’t something that can be described in one sentence, other than, “Aaarrrggghhh!”
Thanks for listening. Reading, rather.
Happy Thanksgiving.
