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Old 03-01-2012, 09:00 AM   #1
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Not sure what's wrong with me.

My journey started about a month ago. Before this mystery occurred, I was a healthy active person. The only event I can think back to was my OBGYN was concern with the weight loss from my last visit and had me follow-up with my family Doctor.

This is how my mystery started. I had a sharp headache on the left-side of my head, which left the left side of my face numb. The headache only lasted about 30 sec. Then I had a sharp pain down my left arm (once again very quick) and my speech was impaired. I went into the ER a day later and they performed a CT-Scan and MRI ruling out stroke, all was clear.

I thought all was good and went home. My speech would come and go along with the numbness of the face. Then I started tripping (started with my right leg) and could hardly keep my own body weight-up. Once again we went into the ER and my arm started involuntary tremors. They performed an MRI of the neck and all was cleared. They injected me with a drug, which gave me back some control of my legs and sent me home. Although, my legs were weaker then before.

The next day once again I started tripping over my own feet and had problems keeping myself up. The tremors started back-up. Once again I headed into the ER. When we pulled up, the tremors started in my feet and into my arms, they were so violent they looked like seizures. I was admitted into the hospital and was monitored by a EEG. Then I was placed in ICU and once again given the same drug as in the ER.

They moved me to the Loma Linda ICU. After three days in both ICUs, the EEG showed the "seizures" where not coming from the brain. The neurologist team sent in the psychic team saying it was "stress". The psychic team informed the neurologist team it wasn't stress related and I was back in their court. They discharged me telling me to follow-up with my family doctor and sent me home with no medication.

I came home and sure enough once again I could barely keep up my own weight and the spams were in full swing. They are so strong that they arch my back. I look like the exorcist. My family Doctor saw three of these episodes. He placed me on Baclofen 20mg, which I still get twitches mainly with my toes and I am differently weaker then before. For some stupid reason I went to another neurologist, who with out even talking to me ladled me as "stress" and started winging me off of the Baclofen. "I can almost grantee you, you won't have anymore symptoms", he said. The very next day with just lowering one 20mg pill to 10mg, on my right foot, my toes started acting up and the full blown tremors started up my leg, then into my right arm. My speech started to be infected once again (the middle part of the tongue, the muscle stops working for a short time), I can feel muscle cramping in my legs and tightening of the muscle. I emailed my family Doctor who place me back on my full doses of Baclofen.

Only with medication are the symptoms under somewhat control. I still have twitches, weakness, and tightness of the muscle. Through out this process I have had little to no pain. I am now sporting a little limp with my right leg. I had my family Doctor test me for Lyme diseases to start the elimination process or hopefully have an answer to all this madness. I see him on March 9th. I would love any insight or suggestions.

It's amazing how after one day your life can change forever.

 
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Old 03-01-2012, 12:22 PM   #2
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Re: Not sure what's wrong with me.

Have they tested you for MS (mutiple sclerosis) ? Are you on any other medications other than the Baclofen for anything?

 
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Old 03-01-2012, 12:43 PM   #3
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Re: Not sure what's wrong with me.

I am not sure what all they tested while I was in ICU. My family Doctor requested the lab result and test results from ICU. He'll go over those when we see him on the 9th. Whatever was tested, we do know that my white blood count was a little low and that all MRI's, Cat-scans, and EEG were all normal. We're not even sure if they did an x-ray of my spine. We saw something that hinted to the fact there may had been one done on some paperwork, but nothing was said.

The only medication I am currently taking is the Baclofen. I feel like there is a sleeping loin inside me waiting to wake-up. I can't stand-up as long as I use to with out feeling weak in the legs.

Thank you for the response!

 
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Old 03-01-2012, 12:46 PM   #4
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Re: Not sure what's wrong with me.

I am not sure what all they tested while I was in ICU. My family Doctor requested the lab result and test results from ICU. He'll go over those when we see him on the 9th. Whatever was tested, we do know that my white blood count was a lower then normal and that all MRI's, Cat-scans, and EEG were all normal. We're not even sure if they did an x-ray of my spine. We saw something that hinted to the fact there may had been one done on some paperwork, but nothing was said.

The only medication I am currently taking is the Baclofen. I feel like there is a sleeping loin inside me waiting to wake-up and roar. I can't stand-up as long as I use to my legs feel weak and I get shaky (as if I had way too much caffeine, which I only have one glass of caffeine a day).

Thank you for the response!

 
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Old 04-16-2012, 05:48 PM   #5
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Re: Not sure what's wrong with me.

When these symptoms started did you start or stop any new med? Have you ever had any head injury? My moms started due to a medication or a combo of them

 
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Old 04-16-2012, 06:05 PM   #6
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Re: Not sure what's wrong with me.

The link I have to dystonia would be that my grandmother's family were Russian Jewish, and her mom's side came from Germany. It would be a genetic trait.

 
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Old 04-16-2012, 08:41 PM   #7
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Re: Not sure what's wrong with me.

I'm starting to worry moms is genetic also that was brought out full force by her medicine she ,my brother and I also have different shakes and the restless leggs only moms are much worse my leggs don't bother me enough to take medicine for it.....although now I'm terrified of medicine any more so I'm not planning to take medicine until I can't bear it any more....I wish you and your daughter much luck!!!

 
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Old 04-17-2012, 07:41 AM   #8
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Re: Not sure what's wrong with me.

The gene mutation for the Jewish community is called, DYT1. It is early on-set torsion dystonia. If what I have is for sure dystonia, my muscles now react from feet all the way up to my head.

Thank you for the well wishes for my daughter! I hope you and your brother can find peace and your mom healing!

 
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