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thunder_dog88 (@thunder_dog88)

APS SLE with ITP

Autoimmune Diseases | Last Active: Aug 19, 2018 | Replies (8)

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@thunder_dog88

Hi! Thank you, I will check it out. My problem is I live too far away from good doctors. And the ones I go to cannot explain the red spots and the burning pain. (Robert Wood Johnson Hospital in NJ, about 5 hours away). It's like they become stupid, and don't seek to get in touch with an expert to find out what it is, why, and what I can do about it. My primary local doctor is clueless, and tried to find a Hemotologist with immunology backround but couldn't. Then found out, he was required to stay 'in network' and not go outside that network no matter what. I have private insurance and can go where I want to..but can't find a doctor to not quit on me or say 'I dont know', I've had 9 doctors look at my feet and legs, and hands and arms saying 'I dont know'. But I tested positive for APS and SLE, high liver count, and high blood count. Low platlets is the benchmark to having CAPS which would qualify me for TPE (Theraputic plasma exchange). Why do I have 'high' blood counts yet have purpura (big and small spots) and webs under skin? That's a symptom of low platlets not high ones. Unless my platlets are not functioning right and my marrow just keeps pumping out more. They did confirm I have too much blood in my system. Lol. I could feed 'TWO' vampires. But seriously, I feel I was sent home to die. At 53 years old. And yes, everyday it gets worse, the burning pain, new spots showing up on my face, hands, legs. No, no sores. Occasionally I get hard blisters on my fingers, and cuts or scrapes take a long time to heal. Thank you for answering my question!

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Replies to "Hi! Thank you, I will check it out. My problem is I live too far away..."

Hi @thunder_dog88,
Another resource that might be helpful for you is Google Scholar (https://scholar.google.com). You can find a lot of medical research and articles and you can sort the search results by date using the links at the left.

I did a search of Google Scholar with the phrase SLE treatment options and it found the following articles:
https://scholar.google.com/scholar?as_ylo=2018&q=sle+treatment+options&hl=en&as_sdt=0,24

Hope you find some answers soon.

John

Hi! I just called Mayo Clinic number you forwarded to me. The guy there gave me a phone number to give to my Rhumy in N.J. To call and ask for wisdom. A physician refurral service. I left a message for Rhumy and pray he is not too arrogant to call. Some of these doctors get so busy and sometimes drop patients who's case is too difficult. Healthcare is a business. I will look up the other links you gave me. Thank you, again! 🙂

You are welcome! Hoping your Rhumy follows up. Good luck!

Well….my Rhumy called me back and 'dumped' me as a patient. Told me to go find another Rhumy that can better treat me, they give up. I think they got angry I gave them the Mayo Clinic Referring Physician Service number to help with my case because I'm in pain and having a reaction to the Planquenil. They told me to off the med, and find another doctor. Great. Proof once again, the business of healthcare, whom doctors can select low hanging fruit and 'dump' patients who have rare diseases. I feel like the bottom of my world just fell out. 🙁

I would be tempted to call the state and report the doctor or at least find out what your rights as a patient are. You mentioned New Jersey. If that's where you live here is a website the may help – If you scroll down you can see the name of the patient advocate who may be able to help.
https://www.njconsumeraffairs.gov/staff

John

Hi. I posted another question with a pic of my legs. They burn extra hard tonight. I'm finding it hard to get comfortable in bed. I can't let my feet touch each other, they burn and sting where the blanket touches them. Maybe someone on here has seen these type of spots and can give me some wisdom. I've been off the Plaquenil for two days, and the spots are still intensifying. I had already gone to the emergency room a few days ago, they said they didn't know what spots are and couldn't give me treatment for the pain. Someone must know what I have, what these things are. Is it ITP or CAPS? If so..doesnt that mean TPE is a cure? I cannot walk into an aphorisis center and demand plasma exchange…I need a doctor to confirm things and walk me thru stuff. That's the rub…find a dam doctor who cares. *frustrated, sorry