posted
My symptoms started about 4 years ago. Started with muscle twitching that eventually spread to entire body. There is virtually no place on my body that I don't get them. About 2 years ago I started seeing Drs. I had clean brain / spine MRI, clean EEG, clean EMG and nerve conductance test. All Drs thought I was crazy and kept telling me it was stress. I've also had a number of extrememly strange symptoms. I had pain in my testical for 2 weeks that went away with antibiotics (not sex related). My eyes will twitch really fast when they are closed, though I only know this from people telling me. About 1.5 years ago I started noticing coldness in my right foot. I have difficulty balancing on that foot and my right thigh is always tight. Over the past 2 weeks the coldness has returned and gotten more persistent. I also have experienced cloudiness with thoughts and memory over the past couple of months. These symptoms all come and go with great infrequency. I was convinced I had a neurological disease for a long time. This site has been the first place I have found other people with very similar experiences. Wondering if anyone out there has had similar symptoms?
Posts: 7 | From Central California | Registered: Sep 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Ed, Hi!
I think you'll probably find a lot of people on these boards with symptoms similar to yours.
Although I'd been tired for several years (exhausted is more like it), it was numbness in my right foot and finally down my right arm that finally got my attention.
Tons of specialists were stumped; brain MRI showed absolutely nothing.
Thanks to this board, I found a really good LLMD and started abx.
Since starting treatment, I had one incident of full body paralysis and had to be taken via ambulance to the ER. I could think and even talk...just couldn't move any part of my body. That was the most afraid I've ever been in my life.
I did test positve for Lyme, even by CDC standards.
The neurological symptoms are nasty and persistent for me. As I type this tonight, the tips of my fingers are numb, and my right foot has its usual tingling.
I can't always anticipate what's going to happen...or when. But I don't have any doubt about what's wrong.
Hope you're able to get some treatment and find some relief.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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My husband John has the same symptoms you have described in your post. His right side of his body paralyses. From head to toe. He gets tingles all throught the right side of his body. His leg and foot got real cold one day and he lost use of it for 4 days. It recently happened again but still all test come back normal.
The neurologist he sees thinks it a certain kind of migrain that causes stroke like symptoms but not damaging thank god! He also get migrains on the right side only. He says they hurt so bad he feels like his eye is going to pop out.
they tested him for seizers and they all came back normal. He is going to start the cognitive rehab at the end of the month. He has started the alstimers meds. Hopefully this helps with the memory issues he his having!!
Joyce
Posts: 34 | From MASS | Registered: Sep 2005
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posted
Hi Ed I'm sorry to say it comes with the territory! I seem to be shaky most of the time - sometimes it's like electricity, sometimes under stress, literally shaking. I saw a neurologist who asked me to walk in a straight line and....I fell down, of course. He wanted to do a spinal, but, smart me knew I should check on Lymenet first. The consensus was not to, so I didn't. Sometimes I still see things out of the corner of my eye whizzing around, sometimes I see my cat in several different places at once - things like that. You just have to calmly access what's happening and decide if it's REALLY important or just ignore it.
Posts: 731 | From NH | Registered: Jan 2002
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posted
Ann-Oh- Can you e-mail me the name of your LLMD?Thanks.
Posts: 580 | From southern new jersey | Registered: May 2003
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Neurontin helps the neuropathy but Screws up your brain function.. not sure which is worse.. I get teh freezing and burning sensations in my feet mostly and in my hands if I take too much ABX without realizing it. While on a minimal dose of ABX I did not get the neuropahy until my back became an issue again.. I am not going to go into details I give up ... I treat one thing and something else gets worse.. and I just don't care anymore I don't think .. I havent been on treatment for 3 months and I am as bad as I was in 2001 and ready to just quit on all of it.. seems I will never get better,,, just appear to be better until I stop the pills.. Im tired of pills for this and that..and now the pain that no one will help me with .. I cant live in a pool and that is the only time I feel no pain.. so why bother as far as I see it I ahve not gained any ground with this disease... the medical professioanls if you can call them that need to get moving on finding a cure and forget this BS treatment as soon as you stop the bugs run wild..
sorry I'm really disgusted with this anymore.. I think Im going to have to withdraw as depression is overwhelming me again.. I hope you all find an answer I havent
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hello,
My major symptom was nuero lyme. I had facial ticks, tingling on my left side of my face, stuttering, my right hand was always very cold as was my right foot. I had all kinds off odd symptoms that just wouldn't go away.
I was put on Biaxin, Plaquenil and Minocycline. I think that the Minocycline worked best for my neuro symptoms. I have been off all antibiotics for over a year and am doing well.
I hope you can find something to help with your symptoms.
~LymeBrat
Posts: 3154 | From NH , USA | Registered: Oct 2002
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posted
I've had numbness/paralysis ranging from one hand to my entire body, ringing in the ears, droopy eyes, fatigue, joint and muscular pain. In general it goes away as the day goes on, so that by the end of the evening, I sometimes almost feel normal.
The night I woke up entirely numb, I had to be taken to the hospital by paramedics. I thought I wouldn't live much longer. Obviously, I was wrong, and had started feeling much better when I started abx about a week ago. Now I'm feeling worse, but since they said that was what I should expect, I guess it's a good thing.
Good luck.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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