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Aug 16, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

NOTE from the Community Director @colleenyoung
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Aug 11, 2016 · My Experience Through Trial & Error" in Autoimmune Diseases

@johnwburns Hi John, I have Multiple Sclerosis, Lupus, Sjogrens, Blifferitis, Psoriasis, Psoriatic Arhritis, Sarcoidosis and Immune Thrombocytopenia. I have been to 4 different Rheumys that have told me that I have Fibromyalgia. I do not have Fibromyalgia, it was MS all along. Because of these diseases I am on a mission to help others so they do not have to go through the red tape sort of speak like I did. I am a caregiver and a Hospice Volunteer and I have learned sooooooo much through trial and error that I can honestly say that sometimes that scares me. lol

Aug 16, 2016 · My Experience Through Trial & Error" in Autoimmune Diseases

Hi John,
My primary diagnosis would have to be Multiple Sclerosis as I have severe spasms and pheripheral vision loss, Gastroparesis and sphincter issues from the muscle weakness. Psoriasis are a constant itch and Psoriatic arthritis is a continuous ache! Having ITP and infusions are also not fun when my blood count is low as this tend to turn into flu like symptoms just after the treatment. I have plugs put into my eyes for the Sjogrens as without those i have the severe dry eye itch! I cant begin to complain enough but Ill stop there as I really prefer to be of help to others rather than a pity party. I have learned alot through all of my illness’s and continue to learn as I go. This has made it possible for me to open a support group for those who do have overlapping multiple autoimmune related diseases. I have been a volunteer for http://www.aarda.org for 20 years and growing and I am very proud to be a part of this very strong and encouraging nonprofit association. Thanks John.

Aug 11, 2016 · 30 Years of Misdiagnosis. in Autoimmune Diseases

Hi John, I agree with you, autoimmune diseases have been around long before you and I were born, what I am trying to do is to create a new disease category, as there are a whole lot of people who are just kind of stuck on a singular disease category such as Lupus, or Diabetes or lets say Shingles and so we have many pharmas making buco bucks on these singular disease treatments when there could be someone who suffers from overlapping or mixed connective tissue diseases and can not tolerate treatments for each of these diseases. There would be a whole lot of side affects and so much more damaging than good. We also don’t need more drugs, we need more research on the causes of these debilitating diseases. We now have an Autoimmune Center in Midland Michigan that one can go too if they have a difficult time getting diagnosed properly. I welcome you to check it out. Its all about bringing awareness, education and research to over 100 autoimmune related diseases.

Aug 11, 2016 · sudden headache in Brain & Nervous System

Such great advice Dawn. Thank you!!