Re: !--- symptoms, no diagnosis- long, sorry

[Guest guest]

I've had a number of tests done. A few open MRI's, only one with contrast, that appeared normal. I had a spinal tap last year about 2 months after the onset of symptoms. I've had tons of blood work done, and been referred to a rhemotoglist (sorry about the spelling) and they ruled out RA, Lupus, and Lyme disease.

Here's the laundry list of symptoms. Over the last 10 years I would have episodes of my legs having that strong pins and needles feeling and be unable to walk very well, stand on my toes etc. It would last about a week with some weakness and then things would improve and return to normal. At that time, my doctor said I had endometriosis and suggested that maybe I was depressed. I never went to the doctor about those symptoms again.

In Feb. 2009 I noticed I couldn't tell the difference between hot and cold on my legs and my hands. Then on 2/27/09, the pins and needles started, like a buzzing in my legs and hands and up my left arm. My right leg was also worse than my left. It hurt, yet at the same time I couldn't feel my legs, like if someone touched my leg. I couldn't hold onto anything. My face became numb and at it's worst point I couldn't feel inside my mouth and had very sharp pains in my face. My balance was horrible and when I tried to walk it felt like I was walking through knee deep mud.

Things very slowly improved, but I define everything like a before and after last February. I have drop foot in my right leg, it has improved over the last year. However, if I become very hot or very cold then it is difficult to walk and I can't move my toes or lift my foot at all. I have a lot of back pain and weakness. My posture seems to be an issue for me now, especially sitting up all day, and I now have a healing compression fracture of the spine. I still have altered sensations in my legs and hands. I drop things a lot. I fall and my balance is not good.

The most annoying thing to me is the bathroom issue. I have an urge to go, but I can't always urinate. It can be very frustrating. One of the specialists diagnosed me with Raynounds (spelling?) syndrome. And the other thing is when you put your chin down towards your chest, that pain that shoots down your back and makes it feel like you could shoot lightning out of your finger tips.

There are a few other things, I keep a dated list to take to the doctor with me. The original neurologist I saw said he thought I had MS all along but could not confirm it with the tests he ran and wanted me to get a second opinion but sent me to the rhemotologist, it took 5 months to get in to see that doctor, and he was very nice, seemed very knowledgeable and said the neuro I had seen was obviously trying to get me out the door. I couldn't get the neuro to send my records to any of these other doctors and it took me 10 months to get them myself and they charged me $50.00 for them.

I could not believe how many errors were in them. He didn't listen to anything I said and he also had listed that I stated I was not weak and had no bladder issues or fatigue issues and even said on one occasion I was seeing him for seizures. None of that was correct. I found out when I got the records also, that the doctor I had seen no longer sees patients, only does rounds for patients the other doctors in the practice have admitted to the hospital.

That brings us to the present. The internal medicine specialist, spinal pain specialist, and the rhem. all agree that I have a neurological disorder and suspected demylenation of the spine and sent all the paper work and records to Ohio State's department of neurology.

Thanks for listening.