Question for Marji on "lack of oxygen"

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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/25/2007 12:50 PM (GMT -7)   
Marji:
 
Just replied to a post where you said your brain damage may be from lack of oxygen.  They said something similar about my dementia, lack of ability to tolerate exercise, and mostly that I lost all my teeth from "lack of oxygen".  They did some test on me in the hospital and said my air quality was that of someone who smoked six packs of cigarettes a day!!  I take it that isn't good. 
 
Do you know of any literature and/or given any explanation as to the cause of this lack of oxygen?  I have been trying to research what this is for years to no avail.  I can't find a reason for it.  Is it because of the CNS?
 
Any information will help - Thanks - 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.  
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/25/2007 1:30 PM (GMT -7)   
Don't know, and the docs don't seem to care to find out, though they are supposed to. I know that my pulmonologist years ago said that I had COPD and asthma from scarring to my lungs and bronchial tubes from repeated bouts of pneumonia. I know that hashimotos hypothyroid, liver disease, neck(spine) problems, and diabetes can all make asthma worse. Also, sleep apnea can be a problem because you deprive yourself of oxygen because of that. I have an irregular heartbeat as well and anticardiolipin antibodies and have had atrophy to my heart that healed up after my flare was over. I think that the scarring and my inability to take in as much air, I don't breathe deeply enough, but even when I do, I don't get adequate oxygen, so maybe just a problem with the blood vessels and stuff in my lungs. I also had active TB when I was young. I know that treatment for the diabetes, hypothyroid, and neck surgery all improved my breathing ability. I would ask them why your lungs look so bad. Cigarette smokers usually have "dirty lungs" and unless you're a coal miner or something, I don't see how your lungs would be dirty. Do they mean fluid or scarring or paralysis of the cilia (the little fingers in your lungs that help you breathe)? I would ask what they mean by that and what they want you to do. I've been trying to get oxygen for years and a nebulizer. Those things really help. I don't like advair, I was on it for a year, it took six months to work and only worked for a few months, then started making my lungs worse. I have heard this is not atypical. I'm assuming you have an inhaler? Ask what your diagnosis is, COPD from chronic bronchitis or emphysema? There are two different types. The second type is usually what smokers get, my boyfriend has it. The first type is what I have, from repeated lung and bronchial infections and all. Let me know.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/26/2007 9:55 AM (GMT -7)   
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.  
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/26/2007 6:26 PM (GMT -7)   
Hi Kristin--
They never found out why I have it. I'm assuming it's from hypoxemia. I do so much better with oxygen too. It sounds like you have some lung problems and that could be it. I didn't catch whether you had pulmonary tests or not. If not, your doc should send you. My "dementia" was/is slowly progressing, forgetfulness, feeling lost, a headache like you you get when you don't get air and feeling like you are going to pass out alot. A lightheaded numb lip feeling. You are very right, you do get used to it. I have to see my primary again and try to bug her for oxygen, or at least to investigate. If they do blood gases it will show the problem. Breathing deeply doesn't help if you have a problem like mine because all it does is to raise your CO2 (breatihing into a bag is worse). The problem is that you don't take in enough oxygen for some reason. The finger monitors only measure oxygen on one side of your heart, according to my pulmonologist. My last venous bloodword showed high CO2 in my venous blood. But your arterial blood is what they need to look at for sure. It's funny, we can get all kinds of nasty harmful, mindaltering pills, but we can't get oxygen. My inhaler helps at times, but like right now, in the past few days, I feel my brain is getting worse and it scares and upsets me and it will probably last for weeks. I just don't feel like i can ever catch my breath fully. I hope you have better luck and that you feel better soon. I would think that with all the stuff you have going on that they would jump on the chance to fix something or at least make you feel better. Sometimes I wonder how much better we would all do with a little more oxygen. Take care.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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