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Lyme Disease Message Board


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Hello all,

I live Albany, NY. Since April of last year I have had neurological issues that no one can diagnose, and that seem to be slowly affecting more of my body parts all the time.

Started out with a weak feeling in my legs durring running. Within weeks it became a general cramping, sore, overused pain that overtook both my legs from foot to upper thigh in a matter of days starting with my calves and moving upward each day. This persisted for a month or so.

Physical therapy helped to a small degree until they put me into a heated pool (98 degrees) for a couple of weeks. After that my legs felt so weak, and shaky, and I had muscle twitches all over as well as shooting pains in my hands and feet. The terrible weak feeling subsided after stopping the pool treatment. A few months later the sensation spread to my arms, neck, and back of my head all within 24 hours. Same thing..weak, sore, overused pain. It was painful to dry my hair or carry heavy objects.

Now, 4 months later, I'm having light sensitivity in my eyes, headaches, momentary blurry vision (only for a second) when switching between close and far away things (like notes in class especially). I have numbness in the front and side of my neck when holding a position for a while, my ear goes numb on the side I'm laying on at night, it gets achy inside, and I feel like I can't hear well out of it. As soon as I pick it up though, it goes away. I have strange numbness on my torso that comes and goes, and the hot water from the shower makes the skin on my back completely numb. Hot water baths give me motion sickness with some nausea, and sometimes when I'm tired or stressed I get motion sick. Stress makes it worse. Sometimes the week before my period it is worse.

Also, when I am mentally tired or stressed, I get forgetful and confused, and have difficulty writing things out quickly. (ex..trying to write 1.50 and I write .150). Sometimes at work I have to stop for a minute and think about what I am doing. It's scary.

I have seen two neurologists, a rheumatologist, and casually a friend who is a neurosurgeon. Noone thinks I have MS.

I have NO evidence of actual weakness (in fact I was told I was quite strong) even though at times my muscles feel very weak.

I have had blood tests for EVERYTHING you can think of..vitamin deficiencies, muscular diseases like myasthenia gravis, viruses (lupus, lyme, ect..). Chest x-rays. You name it, I have been tested for it.

Just this month I had MRI's of my brain (two of my brain on two different occasions), cervical spine, and lumbar spine WITH contrast and everything came back perfectly normal. Doctors say no MS but have no diagnosis for me. It has been almost 9 months since onset of symptoms. I have Crohn's disease.

Even though I had two lyme tests (one was the Western Blot) and everything came back okay (except my doc said I tested positive for one thing but that many people test positive for it and it is not enough to be considered lyme disease), could it still be lyme?

Any help or insight anyone could provide would be immensly appreciated.





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