Just want some sort of diagnosis

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New Member

Date Joined Nov 2017
Total Posts : 3
   Posted 11/15/2017 12:09 AM (GMT -6)   
Thanks in advance to those of you who post an answer.

I think this all started 5 years ago when we found mold in our house. Over the years since finding mold, I started getting fatigued, joint pain, agitated/irritated, my xiphoid process popped out, my upper left quadrant (spleen) was always sore, insomnia and frontal head/ear pain. Not much for doctors, I tried the homeopathic route until things started to get unmanageable. Fast forward to last year when I finally settled on an ENT for my health issues. He said I had a deviated septum which was causing chronic sinus infections and I needed a septoplasty. To my knowledge I never had any sinus problems, but his description and diagnosis seemed legit. I had a septoplasty in April and have been on the verge of loosing my mind ever since.

My face, right arm and back of head HURT throughout the day. My insomnia is way out of control, my vision gets blurry to the point I shouldn't drive, words are occasionally lost, my ULQ is still achy and I feel like crap most days. I met my deductible with my septoplasty, so I figured I'd go all in and try to resolve this problem while it was covered. Since I started my quest, things have gotten increasingly worse, to a unsustainable degree.

The ophthalmologist thought the problem might be optical migraines or auto-immune (slightly protruding eyes). The internist had no clue. The ENT thinks ocular migraines, but has otherwise blown me off and won't acknowledge any of my pain issues. The neurologist figured either the ENT did damage during surgery or some auto-immune problem. The neurologist said the pain s/s aren't inline with optical migraines. My MRIs came back negative for damage caused by surgery or any other brain issues. However, my AST levels are elevated and I also have an ANA 1:40. The neurologist prescribed beta blockers for the debilitating headaches and wants me to see a referenced family doc to figure out the rest. Up until 5 years ago, I was a very healthy former professional cyclist. I know how to endure pain and am body aware. I KNOW something is wrong, but like so many of the posts here, there is no easy answer.

Lupus has been discussed by both the ophthalmologist and neurologist.

Thoughts on my next step? Thoughts on my s/s? Please help!

Regular Member

Date Joined Feb 2013
Total Posts : 52
   Posted 11/15/2017 6:59 AM (GMT -6)   
Only a qualified rheumatologist should be diagnosing SLE. Ask your GP for a referral to one that has experience with AI issues.

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 11/15/2017 10:27 AM (GMT -6)   
Yes, I agree with Tinkerbee - if auto-immune causes are indicated it's best to see a rheumatologist!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Nov 2017
Total Posts : 3
   Posted 11/15/2017 11:14 AM (GMT -6)   
Up until all this happened, I never went to the doctor, so I don't even have a GP. I now understand that having a doctor that has a annual record of your health is important, but I'm a little late for that. That said, what type of doctor do you recommend to establish myself with for the long term?

Thanks for your help.

Regular Member

Date Joined Jun 2016
Total Posts : 57
   Posted 11/15/2017 10:37 PM (GMT -6)   
When I first became ill I also did not have a regular doc. That was the first thing I needed to do. Once you get a regular dr. he or she can then refer you to a specialist . Also, once you get an appt. with a gp bring a copy of your past bloodwork if you can.
Best of luck to you!

Thyroid disease 2015, Lupus and Sjogrens July 2016 and Fibro October 2016
I'm Just gonna keep on smilling

New Member

Date Joined Nov 2017
Total Posts : 3
   Posted 11/15/2017 10:47 PM (GMT -6)   
Thanks BreRosie

Veteran Member

Date Joined Apr 2006
Total Posts : 1342
   Posted 11/16/2017 12:01 PM (GMT -6)   
You need a PCP for your overall care and a rheumatologist for your autoimmune problems.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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