I understand you guys are not docs, but maybe someone out there has had similar experiences. I apologize for the length of this letter. All my symptoms began in Oct. 2008. My first symptoms were migraines, sinus pain, and horrible fatigue. I went to pcp, had a cbc with normal results. I also had a ct scan on sinuses- results=normal. After that I began to have excruciating right side only jaw pain, which is chronic till today. The sinus pain did go away after about
2 months of facial massages. My pc suggested I see an oral surgeon for a tmj x-ray, results=normal. He said it could be a muscle issue. Months after that, I began waking up w/ a stiff neck and neck pain, and began to notice that I was so off balance when I got out of bed in the mornings. No spinning sensation, but it does feel like the walls are moving w/ me. I went for my 1st visit to a neurologist, had a head mri and results=normal. I waited a couple of months, just hoping the symptoms would pass, but they didn't. Went back to my pcp and she told maybe I was just depressed or it could possibly be fibro. She started me on Cymbalta w/ no relief.
Soon after, I developed a gait disorder- which comes and goes till today. It could last for up to minutes to the longest= 7 days. The best way to describe it is like i have a brick on each foot- a heaviness when I walk. It almost feels like I am learning to walk and I can't control the movement of my legs. My left leg is stiff and a limp in my right leg. When walking down stairs- there like Frankenstein steps.
In August 2009, I began waking up in the middle of night w/ diarrhea which lasted for about 10 days and very bad stomach pain. I went to pcp and I requested a stool sample be taken. They found cryptosporidium parasite ova. So made an appointment with a gastro doc who didnt think that my stomach pain was due to parasites but something else could be going on, because I was also having bloody stools and very frequent bowel movements. At this time that my stomach pain began, I experienced my worst feeling ever- I felt like I was going to die! I had a burning pain, like my body was on fire that would begin at the top of my head and just radiate throughout every part of my body. This lasted for a whole day. It would come and go. Maybe this was the start of the anxiety that just hit me. I never had anxiety issues before. The next morning, I woke up to my first panic attack of my life. I thought I was having a heart attack. I continued to have panic attacks upon waking up. When I would stand, I would feel so off blance. I spent many days in bed, and my husband took a week off of work to help care for my kids. The gastro doc suggested I have a colonoscopy, and I had 2 colon polyps removed. Went home still continued to experience horrible sharp p ains in my stomach. She scheduled another colonoscopy in December, and had 2 more removed. How could she miss them? So frustrating, and I'm the one dealing with the pain, which is just heightening my anxiety.
At that point, I decided I couldn't handle the anxiety. I was just so scared at this point and so made an appointment to see a psychiatrist. She diagnosed me w/ an anxiety disorder, but was very confused and could not explain what could be causing my other symptoms. She put me on paroxetine 20mg, xanax .50 mg, and klonopin 1mg. I do not take xanax anymore, but I am still taking the other 2. She had also put me on Lyrica- no relief. No more panic attacks since starting paroxetine and klonopin, and it helps with my nervousness. And if my other symptoms were anxiety related then wouldn't these meds be taking care of my other symptoms as well. I decided to see another neurologist I had a cervical spine mri . Results were disk herniation at c5-6 and straightening of the normal cervical lordosis?? I also had an upper emg- results= cervical radiculopathy- not really sure what this is. I also had a second head mri-r esults = normal and thoracic spine mri was normal. Doc basically said rotate head in shower to help neck pain and that my walk will go way, and I'm still waiting for this day. I also did have 6 cervical cortizone injections from this doc- felt so much better with the pain and didn't experience the walk - everything was good for 3 months, and then everything came back again! I have been told I have fibro, and I have tried cymbalta and lyrica w/ no benefits to me. I am sore at the tender points they look at to diagnose fibro, but I do not suffer from an all over aching body. My pain is basically the migraines, neck pain shoulder pain, and upper arm pain on both sides. I also get pins and needles in my hands when I lay down. I also continue to wake up off balance everyday, but it does pass after 30 min. I also have the walk that will come and go, and I never know when it will come. I do get tired and fatigued about mid afternoon , but I think a lot of it has to do with my constant headaches. Just recently on Chistmas day, I woke up to use washroom went back to bed, and trying to fall asleep- my eyes statrted twitching uncontrollably and roloing and my neck would jerk from side to side. During these episodes, I get so sensitive to any loud noises during an episode. I continue to have this, but it never happens sitting or standing, only when I am really relaxed and ready to sleep. I have just discovered a way to stop the episode, just last night- I stretched my neck to the left side- waited a few minutes and it completely stopped. Also sleeping on left side makes my morning off balance feeling a little better. Tomorrow I am goingfor an eeg, and Have been told to schedule another emg. To me- it seems like something is going on wth my nerves. Is fibro a neurological disorder. I know some docs say it is and others disagree. What do u think? Sorry about the book I wrote lol! I feel so much better writing this letter though!