I pray for you and your child. I am crying at the thought of what you both must be going through. I have lupus of the central nervous system and have had those strange muscle and seizure like symptoms. It is so sad to hear a child with such complications. The spasms before they hardened and left me hemipeligic were very painful and then sore for days when they finally loosened up. He must be petrified of the seizures, as I am sure you are too. I kind of thought the sensory damage was cool back then. The tingling was creepy but it was nice not to feel pain and hot/cold sensations.
It is important to look at all angles. I definitely would find a great neurologist who has experience with a lot of different diseases. They had no idea what I had for 8 years as my problems were neurological in the beginning and I did not yet meet the criteria for lupus. Three main systems are nervous (central, peripheral and autonomic), blood and cardiovascular that need to be groomed over for possible causes of neurological problems. My girlfriend had MS with similar symptoms. Again, I have heard of lymes with similar symtoms. Mathis gravis, vasospasms, cardiac disease, etc. can all have similar symptoms. Vitamins have a large play also on the nervous system. Keep in mind it is a lot for a doctor to go through and you need a very knowledgeable doctor who understands these types of symptoms.
Also, keep a journal. Bring it to the neurologist appointments. It will help the doctor see the bigger picture. The PCP told me I was crazy when I explained my/these symptoms. It took years and three neurologists before I found a neurologist who knew it was a problem with the central and peripheral nervous systems. Finally, someone said it was normal for what I was experiencing. Doctors have different views and experiences. I pray you find one that meets your son's needs. My heart is with you both - Kristin
Dx: Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx: Atenolol, Aricept, Flexeril, Motrin Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.