Thanks for answering. I only had pneumonia 3 times in 20 years. Nearly killed me (20% chance of living) when I was 17/18 years old. But I think the other 2 bouts were fairly minor. Yeah, a lot of weird heart problems too and dypnea/sleep apnea. Not a coal miner. Have had Hashimoto's. Oddly, even with the blood clots, my PT and PTTS are fine, no AA, APS or LAs. Therefore, they can't find a reason for my blood clots either. I presume some type of vasospasm. I go through periods of severe basal and hemipelgic migraines. Now bronchitis I get all the time. Maybe I should get tested for the COPD. Would it show on the x-rays? I had massive scarring in both lungs when I got the pneumonia bad but the doctors didn't say if it was still there or not when I got pneumonia this year. I'm with you on getting oxygen. The one time they gave it to me, I felt like a came alive again. I didn't know until then how bad off I had been. I guess you just get use to it. Would give anything for that energized feeling again.
I don't have an inhaler. The docs tried to give me allergy medicine, but nothing worked and I never had allergies like that. I think it was given because I had sinusitis all the time. The only allergic reactions I get are skin ones though. The dyspnea usually goes with the heart issues.
Did your doctors ever say what caused the brain atrophy? Is it progressive or did it just come on from one flare? If you want to talk about
it, I am curious about
how it has affected your functioning. My dementia seemed like one big flare, and I am improving over the years. They originially had it as Alzheimer's, but I don't think it gets better like this. It is all front left hemisphere damage. All I know is it is from an organic cause, but they never found the cause. Unlike yours it never showed on the MRI. I find it interesting yours did. It isn't cute anymore when it starts messing with your head or vital organs.
Hey, do you get those crackling noises in your temple area when you do get air/oxygen? Sounds wierd I guess. But I hear little crackling noises like something is
opening up a bit at a time. Maybe it is my sinuses? But sometimes when I get enough air/oxygen I feel it deep in my head too. I've been told I don't breathe deeply enough, I try but can never seem to get enough oxygen in there no matter how hard I try to concentrate on deep breathing exercises. It keeps missing the boat somehow.
I wonder if the neuro problems could shut down the oxygen supply causing intermittent hypoxia? I may try that theory next. Also thought perhaps my enlarged blood cells (high methylmalonic acid) may be the cause some how. Pretty complex stuff, I guess that is why the doctors never take on this challenge. I'll keep an eye out for this stuff. Thanks for talking - 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.