I have Lupus, Sojourn, Hashimotos, connective tissue disease.
Lupus also causes autoimmune asthma. My first asthma attack was 6 months.
On top of that I have autoimmune severe axonal sensorimotor dysautonomia peripheral polyneuropathy
Small fiber neuropathy
Cardiac autonomic neuropathy called CAN where I am told the nerves are dying off in my heart causing uncontrollable blood pressure problems too high or too low my heart beats too fast or too slow. Bottom line I no longer feel my legs or arms. My drivers license revoked as of age 55 I am now 63. Somedays I am wheelchair bound. I have to have help lifting up my legs to get in and out of the car. When my son takes me to my doctors appointments. So yes I understand the frustration of it all. The motor neuropathy causes uncomfortable tremors in my hands and legs. My body doesn’t control my body temperature and unfortunately it causes seizures. Just what I always wanted not. Having Lupus I have over 30 different drug allergies including all seizure medications. These autoimmune disorders and your nerves dying off causes paralysis.
None of it is pretty. The last two months I have lived in constant pain. The neuropathy makes you feel like your body’s being electrocuted. Pins and needles. I can no longer cook without cutting myself since I don’t feel my hands I end up cutting them and get to go for stitches. Unfortunately, the more I read up on it and the more continuing education credits I do for my RN license the more I learn. I can no longer work because my tremors don’t allow me to do IVs or shots so I am on disability. So yes I know what it’s like for your neurological system to fail and autoimmune problems on top of it. Plus I have a disabled 29 year old. Lupus has a genetic portion you can carry to your children. My 40 year old son refuses to have children. He doesn’t want to watch them to have to struggle. So I will never be a grandmother over this. What I have learned new studies use IVIG for lupus my rheumatologist is trying it on me. I was on it from age 10-18 for my autoimmune problems. It was given to me IV over five hours on the weekends. Growing up as a child while most people playing I sat in a hospital on the weekends where I could go to school. It helps your immune system and builds it up. I get sick very easy. My EKG from my cardiologist said today’s ekg looked the best it has in years. He is doing an cardiac echo to see if the pericardial effusion is gone. So the IVIG Panzga is working for me. The rheumatologist stopped it because he was not monitoring me properly. The insurance wanted proof it was working. We found it today in my ekg. IVIG information online in the journal of rheumatology using IVIG for Lupus