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In the discussion thread: Symptoms of Lupus [View all]

Response to blueinredohio (Original post)

Fri Jul 6, 2018, 07:30 PM

11. Hi there! Sorry I'm late to discussion!

I have had Lupus for over 20 years. There are 2 types. One is the skin type, which I donít have so canít tell you too much specifically about that. I have the other kind, which is systemic (SLE). It is hard to diagnose, but the good news is that although there is no cure, there are very new medications that, if diagnosed and treated early enough, can stop the progression. Also, although when I was diagnosed, Lupus was pretty much a death sentence (I was given 5 years) it really is rarely the case, so donít be afraid. Medicine has come a long way.
Now my SLE comes with pain, fatigue, and flu-like symptoms like fever, sore throat, etc. Iím now on a chemo maintenance program as well as prednisone and really a whole host of drugs to counteract symptoms. The initial symptoms were pain, vomiting, and extreme exhaustion. I also had a facial and neck rash. Also multiple miscarriages. I was in my 20s. In the last 10 years it got into my spinal cord (thatís part of the systemic issue, it invades your bodily systems) and I developed serious neurological issues including, but not limited to, massive seizures. This only comes with a small percentage of patients, so donít worry. And keep in mind it took a long time for this to happen. The neurological part forced me to end my career, which still hurts, but I am healthier. Being on constant chemo and working in the public school system was a ticking time bomb that almost ended my life twice, and that was quite an eye opener as far as what is really important. In case you donít know: itís not your job, no matter how much of a difference you think you are making, and itís definitely not money. And if you have kids (I have an adopted son) Iím saying this because I wish someone had said it to me before the doctor is the hospital told me I had 36 hours left with him. Once again, beat those odds so Iím hear to tell you!
As far as doctors, you need a rheumatologist, but one in a teaching hospital. Do NOT go to a small town rheumatologist. They will tell you that you are depressed, hormonal, flat-out crazy, drug-seeking, and/or have fibromyalgia (which is s gift horse- provides you with some meds, so take it, but keep looking if it appears to be the wrong diagnosis).
I know this was a lot. Too much. And I probably answered like 2 questions that you really had, so please feel free to ask!
Please, donít be afraid. The worst thing is not knowing!

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Arrow 11 replies Author Time Post
blueinredohio May 2018 OP
Sneederbunk May 2018 #1
marybourg May 2018 #2
blueinredohio May 2018 #3
marybourg May 2018 #6
blueinredohio May 2018 #7
marybourg May 2018 #8
blueinredohio May 2018 #9
marybourg Jun 2018 #10
NightWatcher May 2018 #4
blueinredohio May 2018 #5
LineNew Reply Hi there! Sorry I'm late to discussion!
Tucker08087 Jul 2018 #11
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