Hi there! I'm just a girl who is fighting to be diagnosed!I am trying to get through school as well. Teaching myself, figuring things out without much assistance. Dealing with the brain fog that chronic pain gives! Trying to keep up with friends. All while finding the doctor that will finally tell me what has been plauging my life since November '09!
My interests include playing my violin, hanging out with friends, and just trying to get through life!
For those of you who do not know my sitiuation (which I am assuming is everyone), I will give you a synapse of what is going on.
So I woke up one morning last November, and I had a headache. Dull, achey, bleh. I took some motrin, and it went away. Then the headaches came back. Took tylenol, it worked. Eventually all meds stopped working around Christmas, and in January I ended up in the ER with a migraine.
I saw a pediatric neurologist, and he put me on Topomax and Maxalt, which didn't do anything for the headaches, and higher doses of the Topomax made me have depression and anxiety. In April, I got horrible leg pains. They got so bad, I had to go to the ER. They gave me some pain meds and sent me on my merry way. I got the number of a new, adult neurologist. My pediatrician ordered X-rays of my legs and reffered me to an orthopedist who had a bone scan done and a veinous and arterial doppler. All tests were normal. My mom also scheduled an appointment with another pediatric neurologist, which was in June (we dumped pediactric neurologist number one)as well as the adult neurologist, but that appointment was in April.
The adult neurologist put me on amitriptyline. He reffered me to another musculoskeletal doctor in the same practice. That doctor did an EMG/NCV. I had also had a CT of my brain done in January, an MRI of my head in April, an MRI of my cervical/thoracic spine.
At some point during all of that, we went to see a rheumatologist. He told me I had bursitis in my left leg (my bad leg). He gave me a cortisone shot, and I started feeling better. He also tested for lupus and stuff. All normal. Then a week later, my left arm started to hurt. We went back to the Rheumatologist, and he put me on tramadol (which is a non-opiate opiate. A less severe opiate. We heard that from pediatric neuro number two. I was promptly taken off of it by him) and told me it was all in my head. Tendinitis. Caused by gripping my violin too hard. Dude. I hadn't touched my violin in A FREAKIN' MONTH AND A HALF!!! I told him that, but he didn't listen.
Tramadol did nothing. So anyway, left him and we went to adult neurologist and he reffered us to another pediatric neurologist. We went to her, the day after we went to pediatric neurologist number two(who put me on neurontin and upped my amitryptiline), so she told us to stick with him and she had no idea what was up. They reffered us to adult doctors that would not treat kids and stuff.
In the end, we went to see a new doctor at the local university hospital (the one who did the repeat EMG). He refered me to a neuropathy specialist. Well, that went really bad to say the least, and she told me that I had a conversion disorder. We called my therapist, who already evaluated me for that, who told me I didn't have it. Now we probably will end up at the Cleveland Clinic at the CRPS/RSD clinic. Every road has pointed at that condition.
Still have horrible pain control. Still need help from doctors to get through this.
Oh, I will refer constantly to the Spoon Theory by Christine Misederano, so please read that!