new here, looking for a diagnosis
So, I realize this is not a hospital with doctors, but I have not had any success with the numberous doctors I have visited with my symptoms.
I will try to be brief, but I do hope someone can shed light on what may be wrong with me.
I was fine until shortly after I delivered my first child which was about 3 1/2 years ago.
I developed severe insomnia and neck pain. Both were written off as being a new mom...
The pain got worse and spread up my scalp and down my back and shoulders.
About a year a half later I got a stomach bug and 3 days later woke up with tingling/burning in both hands and feet.
Conveniently I had an appt with a neurologist scheduled as i had hoped he would do botox injections on my neck, but when I mentioned this sensation he ignored my neck and was quick to diagnose CIDP. This was based on his physical exam, a NCS and EMG that was abnormal and a LP that showed NORMAL protein levels, but I did have >5 oligoclonal bands and a high IGG.
So I went for a second opinion and he said NO CIDP, but possible MS. Brain MRI was clean as was the cervical and lumbar MRI. So he felt it was neuroborreliosis. I had a positive western blot IGG/IGM from Igenex and started antibiotics. I took a variety of combinations including months of IV Rocephin. I never had any improvement nor did I have the typical "herx" so after 9 months I quit this treatment.
New symptoms are a significant hand tremor (both hands), difficulty swallowing food (it gets stuck in my esophagus and I feel it very slowly and painfully moving down), words come out different than I intend, along with the persistent burning/tingling of my hands and feet, I get episodes where the blood vessels swell very large and are extremely painful to the touch. This will go away after an hour or so, but leaves me with a bruised feeling on my vessels.
I have been told by my chiropractor who does advanced soft tissue work that I have muscle atrophy along the right side of my back (teres major/minor) and others I can't remember. I have fasciculations frequently, but especially when he is working on "trigger point". He feels it is odd b/c the fasc happen above the area he is working and he feels it is more normal for these to happen below the area he is working.
He also said it seems I have TOS as a result of these muscles atrophying and causing my scapula to be tilted then my shoulders are distorted.
My scalp area is now constantly burning/tingling and is very sore to the touch. I get headaches daily that get worse by the end of the day.
Another random thing is that I often smell cigarette smoke when no one is smoking (at work in a hospital, in my car, it follows me).
So, if anyone has any ideas or tips for where this may be more appropriate to post I really appreciate it.
I am so angry and skeptical about doctors lack of concern and the way they use fibromyalgia as a scapegoat. I know this is more than fibro and it is progressing.