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View Full Version : how many of you have rheumy/ neuro/ psychological issue in ur family



ricketyrose
05-14-2010, 05:12 PM
I have just recently found out that it is our calcium that neutralizes our immune responses. As I have said before that my ana titer goes 1:320, negative one week later, 1:640, negative one week later, 1:1260, negative one week later. doctors just kept testing because they said that it was the tests that couldnt be counted on that I was fine dispite all the neuro issues.

So it is our kidneys that are in charge of the hormones
eurythropoetin=signals bones to make blood
renin= regulates blood pressure
D3= calcium up take
so if I have been low on blood, had wacked out blood pressure too low and have osteoporosis, muscle weakness and immune difficulties and hyperparathyroidism would it be fare to say that even though my kidney functions show relatively normal, that they are what is difunctioning.

So I think my titers are going back and forth from neg to pos because I still have the capacity to neutralize them but its a little slow and the titers are higher and higher because my neutralizing response is getting slower and slower.

also I have asked myself why porphyrics dont test possitive for ana even though I beleive that they are the same disease. I think that it is because they slip through the cracks of diagnostics. porphyria is only rare because it is rare that they dont get diagnosed with something else first and it is during these negative periods that they just happened to be tested. its all about what you catch in the act.

I think antinuclear antibodies are bound to show once they settle into the connective tissue. in my body I only had a small sjogrens titer with that so I was still neutralizing it. once it starts into dsdna and ssa then its indisputably lupus and no need to go any further with figuring out the illnesses name. anyway how many of you have illnesses in your family that are either lupus related or neurologically related including scizophrenia cuz thats a neurological issue with a psychological presentation. also I believe that manic depression is the occilation of electrolite homeostasis. all these diseases occilate/ wax and wane/ go back and forth. hell even hypochondria is I think.

porphyria accounts for all these issues

tgal
05-15-2010, 07:43 PM
Someone correct me if I am wrong but why do they keep testing? Everyone knows that our numbers change. They know that we can go from positive to negative and back again. Once they saw you at 1260 what else matters? If I sound short please understand that it is not at you. I am sick of the doctors relying too strongly on numbers and too little on what is actually happening to the patient. If a rhuemy really understand Lupus he is not going to keep checking to see where your numbers are just so he can get a diagnosis. He would understand that the negative periods means that the meds, and your body, may just be working a bit better at the moment

karenboss
05-17-2010, 02:56 PM
Hi Ricke - I'm going to be honest, your logic path is a bit hard for me to follow - so bear with me. I think if you're kidney tests are normal, that is a good thing. I also think porphyrics is a symptom not a disease.

We have IA diseases in my family, not neuro, though I seem to have some CNS involment (maybe that's why I can't follow you :) ) my sister has RA, Dad had diabetes I have Lupus.

ricketyrose
05-19-2010, 09:31 PM
yeah they kept testing because one doctor would not diagnose me so I would go to another who would test again and still not diagnose me. but I had no elevated sed rate or crp. no sign of inflamation just straight ANA at one point I thought yeah I got a sjogrens titer and they said too much ANA and too little sjogens to be sjogrens syndrome and then I was able to produce tears and that was that. I had a binder in front of me in chronological and catergorical order of my bout with AMAN and transverse myelitis but the doctors refused to look at the evidence that I made redily available. I was left on my own to figure this out on my own and learned that I was not getting a diagnosis because I was not acruing any damage and if I wasnt acruing any damage then this was fixable. a diagnosis is nothing more than a damage assessment. I did have alot of neuro problems + my blood pressure was plumeting my heart rate was spiking and I would wake up almost in shock or sometimes apnea would wake me up. disautonomia is a metabolic malfunction too.

porphyria is a genetic disease that presents exactly like lupus/ MS/ scizophrenia/chrohns basically it has a differential with everything. it is caused by a misstep in heme sythesis. I think that lupus and porphyria are very very complicated diseases that cannot be explained by the "theory of molecular mimicry" which I reject or simply an enzyme deficiency resulting in the heme misstep. Porphyria is autosomal dominant it is not rare.

I laugh best because once you understand the contraindications and environmental sensitivities of the porphyric then you understand the same goes for lupus and once you understand that perscription drugs are dangerous then you are forced to understand that every symptom you experience is a nutritional deficiency. I had to look up every symptom as it happened to find out what I was missing. Most of the time I was off on calcium/ magnesium / sodium postassium. its called electolyte homeostasis and my body was trying so hard to fix this that it was occilating back and forth wax and wane. anyways after one year and the last symptoms I was hospitalized for was a myasthenia chrisis, I am in remission.

see also cortisol cuz it is an important hormone in homeostasis. yes cortisol as in prednisone