Hello, Sorry All of You Are Here...
Where do I begin? I’m no writer, and this won’t make sense.
I’m a 68 yr. young female veteran, Vietnam era. I’m also a 100% disabled vet due to a lot of needle pokes working on our men coming back from tours there. Women were over there, too, I just never had the honor of working on any.
Possible MS couldn't be ruled out
Little did I know, or anyone, that something lurked in so many people's blood. So later when I fell ill again in 1980, everyone assumed it was a non-A non-B hepatitis. Later known as HepC.
Falling and vision games
In the meantime, I would fall, break ribs, an elbow, hit my face. My vision played games on me. Going “down” stairs was terrifying. The stairs would move, in a wavering pattern. I was like a really inebriated person trying to put one foot down, finding the stair! Then the next.
Always getting “possible” MS.
We assumed everything was liver/HepC related
Doctors were concerned about the HepC. Oddly when they did two try’s of Infergen on me, I had a sabbatical from symptoms. It dawned on my husband and I later that my gait and spasms ceased for about five months.
I had really high liver functions so we assumed everything was liver/HepC related. A lot was.
But! These last four years, I became more and more bedridden. It was confusing, frustrating. My days and nights were flipped (that happens with liver patients) but the tingling and pain in my extremities were horrific.
I had injuries to my neck and back from years of falling. Two shoulder surgeries from catching my falls.
I felt like I was losing my mind
In 2017 we left where we live to go see doctors who we knew to be outstanding, caring, and would get to the bottom of whatever was happening.
It was just in time. I felt like I was losing my mind. I was hallucinating from the pain. Pain on one side of my face. Both arms. My neck, across my shoulders. Spasms so bad you could feel lumps.
If I didn’t have the belief system I do, I don’t think I could have pulled through this. (It’s still true because I still have uncontrollable spasms, pain, tingling.)
Nerves had lost the myelin coating
The doctors did an MRI, tested the nerves to find the nerves in my lower extremities had lost the myelin coating. The doctor was sorry it took that long for someone to find it. No messaging going to the brain.
I also have Carpal Tunnel in both hands. He said it’s quite common in MS.
My right elbow is in constant pain, as is the shoulder. But, behind the arm hurts too.
What doesn't hurt?
I mean, what doesn’t hurt? My hand hurts, on top, around the wrist. The forearm.
I had an older wheelchair, now I have what I fondly call my Tesla of wheelchairs. But after being in it an hour to an hour 1/2. I’m down.
Spasms all over. The only place I can be is back in bed.
I know my pain isn't worse than anyone else's
Please know I’m not introducing myself, thinking my pain is worse than anyone else’s. I’d never do that.
I worked in the medical field in some form my whole life until I medically retired. I volunteered with Hospice my last three years of work with patients in their home. I’d never compare another person's pain.
I find myself the patient. Now I’m frustrated and afraid.
Doctors tick me off
Doctors tick me off. I’ve fired one recently. He totally missed my husband's cancer. We don’t sue people. We move on.
Now we find ourselves getting ready to battle a high-grade aggressive cancer, that a doctor told him he could watch for two years! I insisted we be referred. He was, the doctor bumped other patients to operate on him the 30th.
How do I do this?
Stress causes me to fall down, stay in bed.
Whew!!! I’m SO sorry for the book. As a Veteran, I try to be strong.
I just found this support group. I have no idea if it’s a big one or not.
Please know I’m going to be a crummy friend right now.
I’m on system overload.
Were you misdiagnosed with something else before receiving a MS diagnosis?