Greetings everyone,
Been living with this since around 3 years of age, but only recently dianosed after a fluke incident at the hospital during a nerve conduction test.
I say 3 because that is when things started just with my legs bounding all the time when I was sitting in a chair, mom n dad didnt think anything about it (but mom did write in my baby book about it being semi odd but my pediatrician saying I'd grow out of it).
So fast forwars to grade 1, 2 n 3 when bouncy leg started to cause issue in class. Teachers where getting annoyed with me doing it, yet I didnt even notice it happening (I only noticed when I tried to stop it and my legs would feel like something was trying to take them off my body.
My teachers said i was doing it for attention, my pediatrician said it was part of growing pains and I would grow out of it.
Well I never grew out of it, I just learned to mask it to degreees by being overly active so sitting wasn't big in my to do list for extended periods of time, same with hand writing i avoided doing it because of the pain it would cause to hold the pencil for prolonged periods of time.
Years go by, I start jr high and instill have the bouncy leg, hand cramps but I've also now started to have some neck pinching n freezing that would happen out of the blue. Pediatrician still says growing pains and that I will out grow it, mom is starting to question such an assessment and is starting to ask questions of the docs she works with (shes a director's of nursing).
They dont have answers for her, save that maybe it is related to my learning disability or a side effect of having caught whooping cough when inwas 2.5 years old. But they have no answers for her.
Time goes on and in high school most of the issues stop or go to the point that it's not as apparent as it once was. Writing issues get corrected as I get to use a computer for assignments and doing exams (part of the learning disability programs accommodation for me that was put into place).
So high school goes without a lot of issues, neck pain and contortions still happen but by now it is put down to my diving acadent I had that compressed my neck and that it's just a matter of time till that figures itself out (despite the neck issue happening before the diving accident happened).
But then into university, finally on my own I can let my body do its thing without my folks telling me to stop or what have you. But a new thing had now developed, it involved my spine so I would end up with full body episodes that would shake me all over the place (just like a seizure). I tried getting help, but I couldnt just make it happen, as it was a hit and miss deal so no doc understood what was happening and thus nothing dun.
Fastforwars to 2016 from 1999, my moms now dead and I'm struggling to care for a father who has started to develop Alzheimer's (but no official diagnosis at that time) and a husband who's epilepsy is getting worse.
My husband has held me through my full body shakes and the awful feet n toe cramps that has my toes trying to turn in on themselves or my feet trying to rip themselves appart (pre 2016). But then something new starts, pain. Yes pain.
Before with all that was happening there was temp pains and discomfort but nothing like this, nothing like what started out as just a mild lower back pinch that chiropractor treatment helped.
Now, the pain was starting to effect my sleep, and other areas. I was starting to have periods of paralysis. That scared both of us, so I mentioned it to my diabetic doc, he thought maybe peripheral neuropathy so sent me for my first set of tests and nothing no nuroapthy, but the mri and ct came back with spinal OA with late disk degeneration disease.
Was told the spinal OA was the cause of my occasional loss of mobility and other lower body functions. Alright, so I try to adjust to my new reality. I do easy streaching to try and help my spine and keep as limber as possible.
Then in 2017 almost over night I louse speech, as in my gp thinks I have had a mini stroke because my speech goes from lecture perfect to stuttering and nonsense (aphasia). But scans come back negitive, no stroke nothing to explain why I have suddenly lost the ability to hold an intelligent conversation.
The nuro I'm sent to says it is all phyosumatic ::rolls eyes:: so off to a mental health doc I go. He agrees that it might well be all in my head so starts me on a drug, the drug does nothing it doesnt stop my stuttering or other aspect of the aphasia that's happening. But it does make me not care so much a about it as a issue for about a year then another things happens and back to another nuro i go.
This time it's now 2018 and my endocrinologist is worried that i might have micro nuroapthy because of the pins and needles and dead feeling of one legs but also because of how cold my feet are and my fingers.
The neuro finds nothing, again. But he schedules be fore a nerve conduction test the following year. That would end up being in my favor as during rhat conduction test in February of 2019 I would go into a full body spasm and contortions while hooked up to everything. So the computer recorded all the muscle singles that where taking place.
That day I got told to google dystonia because that's what I have. Yet he never said what type or anything no follow up approach nothing. Went back to my gp and well dead end she had never heard of dystonia never mind types of it.
Now I'm waiting for another MRI n CT scheduled for march 2020 at 2am and still no solid answers as to treatment or anything. My gp has tried me on a few things to help with the pain but nun of them have even touched it. The stutter has made me self conscious about even trying to speak and its cost me employment because no one will hire me if they cant understand what I'm saying.
We are existing on my husband's disability benifits, because the government doesnt think I'm disabled enough qualify. Despite the fact I've broken my wrist twice trying to walk and hitting the ground because my legs give out on me and I go paralyzed for a short time. They don't count that I cant even take a bath because I csnt get in or out of the tub without help because the shaking or lack of limb strength to pull myself up and out of the tub isnt there.
Then we can add in that I have swallowing issues, anything even water can get stuck without warning. One ear keeps filling up with ear wax and I have to get it drained on the regular and the ENT doesnt understand why it's happening and as a result of it I am deaf in one ear.
So ya that's my story as it stands right now (save that currently having to figure out caring for my dad as he has just been diagnosed with cancer of the liver/kidney/pancreatic etc).
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