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Kimberly
@sebley12

Posts: 85
Joined: Aug 02, 2011

My Experience Through Trial & Error"

Posted by @sebley12, Aug 16, 2016

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@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

@sebley12

@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

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Quite a burden, to say the least.
Which is considered the ‘primary’ diagnosis? In the case of Sjogren’s for example, it is diagnosed as with primary or secondary if it co-occurs with say, Lupus. Maybe I’m extrapolating but I assume that a similar priority has to be set in order to know where to put emphasis on as far as treatment. So are you on broad spectrum immune-suppressants and/or DMARDS?

@sebley12

@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

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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.

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