Hello, everyone.
In 2004 I developed an area of numb skin on my lower leg. Warm water would feel cold, and cold water would feel warm. At that time I also developed L'Hermitte's sign, though I had no idea why I had electric shock sensations when I put my chin down towards my chest. I went to a doctor about the numbness, fearing I may have a blood clot, but after it was determined that I didn't, he dismissed it by saying he had no idea what could be causing it and that it was probably nothing to worry about. The skin condition soon improved and I gave it little more thought.
Over the next three years, I was fine. But in 2008, I began to have new problems. One day I felt a strange sensation in my right forearm. For the next few days I kept getting the same feeling and I was afraid I was having T.I.As, but the sensation progressed into something much worse. I began to have spams in my right hand along with the sensation, and then the spasms began to affect my right hand, foot, and right side of my forhead simultaneously; sometimes the spams would come dozens of times a day. It was at that time I saw a neurologist, who did several tests, but all came back normal. Within a couple of weeks the spasms completely stopped and I went back to normal and back to ignoring what it might have been.
Later that year I began to have other problems, generally only affecting one side of my body:weaknessa and skin numbness (more widespread) mainly. These spells would come on suddenly, last a few weeks, then go away. It was at this time that I began to seriously suspect MS, especially when in the next year I developed optic neuritis in my right eye. I would nearly go blind if I got too hot or when I took a shower and would go back to normal once I cooled off. That, too, finally got better.
It was around the end of 2011 that I began to always have difficulty walking, but nothing too serious. Then by Spring 2012 I began to have more serious mobility difficulties and I was using a cane full time. In late August/early September 2013, I developed a serious case of MRSA on my skin and I became totally crippled. When the MRSA healed, my mobility improved somewhat, then began a steady decline. I had terrible difficulty just getting to my car, but could still drive. I needed help getting up the steps to my front porch. I couldn't walk unless I had something to hang on to. And since the beginning of this year I haven't been able to drive because I can't get out of my house and down the steps without a lot of help. When I do reach the bottom I have to be helped into a wheelchair, wheeled to the car and lifted into the seat.
I had to start using adult briefs - not because of loss of bladder control, but because I couldn't make it to a bathroom on time, and now I can barely even raise up out of bed. In addition to all of that, I suffer with terrible stiffness in my legs; I have very little balance in my trunk; I can only do no. 2 via the digital evacuation method and I am in constant severe pain. I also have both intention tremor and orthostatic tremor. My short-term memory is a joke. I'm sure I have other things I suffer with, like depression, but they're not immediately coming to mind.
So...why don't I have a diagnosis? Well, because I have no insurance. I have a very, very low income, and do qualify for Medicaid or Medicare assistance, but (of all things) my ex-husband doesn't (and refuses to) pay child support to me through the state, and therefore, the state will not give me medical assistance. I contacted MSAA to get a form to be filled out by my doctor (who tells me every time I see her that MS is not a painful condition) for a charitable MRI for people with MS or even just suspected MS...but she wouldn't even look at the form, handed it back to me, and said "I can't do that."
And so, here I am, worsening every day and utterly helpless.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
In 2004 I developed an area of numb skin on my lower leg. Warm water would feel cold, and cold water would feel warm. At that time I also developed L'Hermitte's sign, though I had no idea why I had electric shock sensations when I put my chin down towards my chest. I went to a doctor about the numbness, fearing I may have a blood clot, but after it was determined that I didn't, he dismissed it by saying he had no idea what could be causing it and that it was probably nothing to worry about. The skin condition soon improved and I gave it little more thought.
Over the next three years, I was fine. But in 2008, I began to have new problems. One day I felt a strange sensation in my right forearm. For the next few days I kept getting the same feeling and I was afraid I was having T.I.As, but the sensation progressed into something much worse. I began to have spams in my right hand along with the sensation, and then the spasms began to affect my right hand, foot, and right side of my forhead simultaneously; sometimes the spams would come dozens of times a day. It was at that time I saw a neurologist, who did several tests, but all came back normal. Within a couple of weeks the spasms completely stopped and I went back to normal and back to ignoring what it might have been.
Later that year I began to have other problems, generally only affecting one side of my body:weaknessa and skin numbness (more widespread) mainly. These spells would come on suddenly, last a few weeks, then go away. It was at this time that I began to seriously suspect MS, especially when in the next year I developed optic neuritis in my right eye. I would nearly go blind if I got too hot or when I took a shower and would go back to normal once I cooled off. That, too, finally got better.
It was around the end of 2011 that I began to always have difficulty walking, but nothing too serious. Then by Spring 2012 I began to have more serious mobility difficulties and I was using a cane full time. In late August/early September 2013, I developed a serious case of MRSA on my skin and I became totally crippled. When the MRSA healed, my mobility improved somewhat, then began a steady decline. I had terrible difficulty just getting to my car, but could still drive. I needed help getting up the steps to my front porch. I couldn't walk unless I had something to hang on to. And since the beginning of this year I haven't been able to drive because I can't get out of my house and down the steps without a lot of help. When I do reach the bottom I have to be helped into a wheelchair, wheeled to the car and lifted into the seat.
I had to start using adult briefs - not because of loss of bladder control, but because I couldn't make it to a bathroom on time, and now I can barely even raise up out of bed. In addition to all of that, I suffer with terrible stiffness in my legs; I have very little balance in my trunk; I can only do no. 2 via the digital evacuation method and I am in constant severe pain. I also have both intention tremor and orthostatic tremor. My short-term memory is a joke. I'm sure I have other things I suffer with, like depression, but they're not immediately coming to mind.
So...why don't I have a diagnosis? Well, because I have no insurance. I have a very, very low income, and do qualify for Medicaid or Medicare assistance, but (of all things) my ex-husband doesn't (and refuses to) pay child support to me through the state, and therefore, the state will not give me medical assistance. I contacted MSAA to get a form to be filled out by my doctor (who tells me every time I see her that MS is not a painful condition) for a charitable MRI for people with MS or even just suspected MS...but she wouldn't even look at the form, handed it back to me, and said "I can't do that."
And so, here I am, worsening every day and utterly helpless.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Comment