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Posts (28)

Tue, Jan 14 6:11am · Parsonage turner syndrome * in Brain & Nervous System

I did the same thing and I no longer use it. Doc said it was just a bandaid for pain and I'd rather live with the little pain that I actually do have now.

May 8, 2018 · Raynaud's Syndrome in Autoimmune Diseases

I had come down with similar symptoms including other things they said I had. I found out one issue was an allergic reaction to a prescription they gave me which was bactrin which is a statin antibiotic. I discovered this when I stopped it as I was taking 3 times a week to prevent lung infections. None of the specialists caught it and I showed and told them all about the inflammation, hives, peeling sking…… They have a tendency to blame skin issues on autoimmune cases. They all have similar symptoms. It is a difficult field for them and not enough research is done to really rule out reactions to the prescriptions they give you for additional things that come up as you go through various reactions to chemicals, food, vitamins and prescriptions. I had to document and really watch effects of everything I ate or took, including supplements. I'm much better now as I actually started discontinuing prescriptions such as plaquenil and gaberpentin (sp) as they are band aids for pain and tylenol works when I do have pain issues. Recently I discontinued Cellcept and so far (after several months no negative effect (I slowly reduced to zero). I did tell my doctors what I was going to do as I can always start them up again and I was willing to go through the discomfort (if I had any). I blame my calcinosis on the medications and I think it was plaquinel or the immune suppressant. That has not gone away but it isn't creating new sites anymore. If anyone has calcinosis and they are taking any of these medications and it showed up after they were on them for a month or ??? let me know. Nobody does research on this and I had to experiment before everything got really bad. My friends can't believe how good I'm looking, hair growing back, gaining weight and a jump in my step. I feel very fortunate and this may not work for you or others but I'd sure like to know if anyone has gotten the calcification under their skin (hard lumps) or even ossification where calcium is growing on the skeleton.

Apr 1, 2018 · Morphea in Autoimmune Diseases

I know from many second opinions on vaarious diagnosis that you may want to research and then get second opinion. After everything I went through the only time I started getting better is when the hospital staff nurses identified infections. Things left unattended can really get away from you and start affectingh many areas and bloodwork.

Mar 25, 2018 · What type of encephalitis? Autoimmune, limbic, or encephalopathy? in Autoimmune Diseases

Would love to hear your outcome when you finally get an answer you feel is correct.

Mar 24, 2018 · Tumid Lupus with SLE Symptoms? in Autoimmune Diseases

Thanks for sharing John. I think we all need to really share in order to find things that are consistent between us to give us other ideas for research. Doctors seldom have the answers unless the blood work is a definite yes or no.

Mar 8, 2018 · Every day I cough up what looks like a scab with ugly mucous and blood in Ear, Nose & Throat (ENT)

Check reviews, ask friends and get a second opinion. "Scab" does not sound right. Prilosec has only 20MG of omeprazole in lieu of doctors prescriptions which are generally 40mg. Do you constantly clear your throat? That is symptom of GERD, get second opinion from someone or a facility know for its expertise. Not all doctors are equal.

Mar 3, 2018 · Parsonage turner syndrome * in Brain & Nervous System

I would get second and third opinions. Doctors/hospitals should give you copies of any radiology on CD with reports. Always get reports from every doctor visit. I even spreadsheet my lab reports to see when infection/inflamation markers go up and down. Nobody figured out why when I was given antibiotics for bronchitis, etc. that it helped more than that. Turned out I had a big gall bladder infection. Doc reports will say they checked throat, eyes, stomach palpation's but during that visit YOU KNOW, they didn't do that as you have them mail you copies of labs and everything. After 4 years of losing 70#'s and looking like hell, I am finally coming back and that is AFTER they removed gall bladder and treated me for candida. I feel my neuropathy and calcinosis is a by product of the prescriptions they gave me. Good luck but document everything in a diary and talk to doctors about their office visit notes if you don't understand something.