Year 10: Things Might Change

I’ve had RA and Lupus since my only child was six months old. Ten years ago I had my seventh head injury. Also around then noticed a waking tremor. Three yrs later diagnosed with PD. Three and a half years later got undiagnosed with PD. Last three and half years ball was dropped for me. Family doctor treating symptoms and nothing more except he thought I have MS. Last year started my own research. My neuro symptoms started to be noticed when I was 48. 20 years after diagnosis of Lupus and RA. I am now 58. About to convert from walker to wheelchair indoors. I never see outdoors. I found what I think is best MS doctor here and demanded referral. I demanded MRI of my brain last year he said it was inconclusive. But with the research I did plus my age and history I demanded a MRI of neck and spine last week. I don’t know how long I have to wait yet for neuro but I thought it could save time. I’ve been feed up long time now.

I’ve gone from pins and needles in right big toe to now waist down. Bowels and bladder does what it wants half the time. Two fingers on each hand. Right thigh, big toe out bottom of foot, left eye, left temple, left lower bicep, all get stabbed or long pins inserted. Not for real but it’s real at the spot and in my brain. Lately my ribs sometimes feel like they are tied together and someone tightens them fast like a corset. My fine motor skills suck which sucks because I’m a fiber artist. My eye sight appears to be declining fast. I have been to two sleep studies diagnosed with IP hypersomnia long sleep form. I sleep from 18 to 30+ hours without moving.

So my family doctor agrees everything else has been eliminated. I don’t think it’s so simple. I think since I don’t have good periods or attacks I just get worse and worse, I am preparing myself for PPMS. Or perhaps I had MS and didn’t know which could mean SPMS. In almost 30 years I’ve never had remission from RA OR lupus. So how can I know. Many of the drugs I’ve been on are also for MS.

I’ve always tried to avoid the self diagnosis but since I got left hanging I had to either jump of a bridge or fight for my right to be diagnosed. Someday soon I hope.

I forgot to mention pain, how can I forget. Of course 30 years RA I have many twisted and bent bones and pain. Well when my big toe started I didn’t think of it as pain. About four years ago is when the needle and knife things started. Since about three years I have like an overlay from waist down of a kind of freezing burn over the broken bone feel of RA.

Another thing is a weird sensation. Water hurts to touch cant tell too hot or too cold. Takes a bit to adjust. Showers are not something I look forward to not even washing my hair. I’m thinking of going bald.

I use to wander the world, was a guitarist in a band, I was a wild flower, a forest princess, a poet, photographer, but mostly a wanderer, I was also a victim, heartbroken, abused, and searching. She is buried because I break down when I go there. I’m not ready to mourn my life, I still have a bit more fight in me.

I live alone with a main coon, two amputee feral cats and a tarantula. I live far from where I’m from.

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