Discussions By Condition: Medical Stories

Stiff person syndrome

Posted In: Medical Stories 0 Replies
  • Posted By: Tina01
  • March 31, 2008
  • 04:45 AM

Hi, I am new to this. So thanks in adavance for your patience.
2 wks ago I was dx with Stiff man (person) syndrome, I have been trying to find some answers, but can't find the ones Im looking for. So maybe someone out there will know what Im talking about, or maybe some other dx.
This is going to be kind of long, Im just going to start from the beginning.
About 20 yrs ago I hurt my rt side of neck and shoulder, went to the chiropractor for awhile and gave up on it, then a few yrs later I hurt my back, again I went to the chiropractor and again I gave up on it, also physical therapy. So for the past 20 yrs I have been suffering pain, some days good some bad, my arms, legs, feet hurt so bad that I wish I could just remove them. I went to a neurologist 10 yrs ago because the arm pain was so bad, but nothing was found. I went on with my life raising my children, working, and being a wife I am a very active women, and now for the past couple of yrs the pain is getting worse, I've had several MRI's, x rays, CT scans, they have found several herniated disc's in my back and neck, some arthritis, and degenerative disease, but they say that's not enough to cause my pain, weakness, numbness, sharp stabbing pain, stiffness, they have checked me for MS, Fibromyalgia, carpal tunnel, I've had steroid injec that twice helped then stopped after the third one. I've been on Lyrica that just put me to sleep, and didn't stop the pain in my feet, and only half of the other pain. So after several months, my neurologist, told me that she didn't have enough technology to keep treating me, so she gave me an rx for neurontin and sent me to a group of neurologists' in the bigger city. I was there with him for hour and half with all my MRI's and other studies, he told me that no I don't have MS, no I don't have fibromyalgia, and no my back and neck are not the problem, he said yes your back and neck are messed up, but this is not causing the problems you are having, he gave me an rx for lorazapam, and said you have 3 things wrong, 1, you have fiberneuropathy in your feet, (which by the way the neurontin has helped that greatly) 2, meralgia in your leg, and 3 stiff man syndrome, I thought he was kidding, he said no and I want you to go home and look it up so you'll know what to expect, and I want you to take this lorazapam, if it works, then we know that we dx you correctly. I left feeling confused and frustrated. So I went home and looked it up, I was horrified. I went to work the next day, and talked with my boss who by the way is a doctor, he had not even heard of it, and he looked it up with me, and said I think you need a second opinion, I agreed and now am waiting for my appt, but not til May. I have to admit that the medication is working, I have been feeling pretty good the past week or so, but I can't take it and work, so the days that I don't get to take it during the day, (I do take it every night) I can barley move, my legs, back, arms shoulders, neck it is so painful by the time I get off work and I can barley walk to my car. So Im thinking that yes maybe I do have Stiff man syndrome, so what I want to know is how fast it progresses, should I do the blood test on my own? because the neurologist sure didn't order it, and since Ive been on neurontin is it going to show a faulse reading, I guess the neurontin helps produce GAD, the stuff thats missing in people with SMS, SPS. So if someone out there can give me any answers I would greatly appriciate it!!!!
Thank You
Tina

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