Sharon - Welcome to the forum. I am so sorry to hear about the struggles you and your daughter have been going through. It pains me a great deal to see others suffer through similar ordeals. I also have CNS Lupus. It took over 10 years to get a diagnosis. It has been very difficult and scarry to deal with. You may want to try Sara on Aricept. It is for Alzheimer's but I have been taking it for the memory loss. It is working, so is cognitive therapy. I have APS also. She will need a constant supply of Heparin or aspirin. The bouts of TIAs (mini-strokes) come on so quick that she won't know what is going on until it is too late. You may also want to watch for loss of muscle control and rigidness as well as for loss of vision. It is normal to seizure around these bouts and the seizures may last for months afterwards. She will need to take steps to prevent seizures and to get help during these periods (carry a cell phone, have any medical supplies needed, wear a bracelet, etc.). She may also want to carry her medical history and doctors telephone numbers with her in case of an emergency. It sounds weird but it could help. I always do this, just in case.
A neuropsychologist can test Sara to see how much damage has been done. Personally, I had lost 80% of my memory with difficulty doing math, speaking and understanding others. It helped to determine my disability so I could receive the necessary assistance I needed.
Please let me know if my experience with this could help you in any way. I am still trying to find medication that the doctors will let me take as they say I cannot take Prednisone because of the CNS lupus will worsen. Hopefully, we can learn from each other. I guess that is what it is all about. Glad you are talking about it as it will help you process all that is going on. There are so many adjustments and readjustments to be made. I would go nuts if I didn't vent a lot. Speaking of nuts, I had what I called simple hallucinations. Nothing too off the wall, not schitzophrenic, but more like things would appear way larger than they should look like or I would hear the same sound in my head over and over again for days. Think I see things that aren't there, that type of thing. So many things to talk about... but I will keep this short. This is a great support group, I hope you will find it a valuable as I have. Take care - Kristin
Dx: Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, 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.