Trying to figure out what's going on...

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amyl4500
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Date Joined Dec 2016
Total Posts : 6
   Posted 1/6/2017 5:52 PM (GMT -7)   
I've not been feeling good for awhile (I won't go into huge detail since I'm posting this using my phone and no keyboard), recurrent sinus infections (past year or two), swollen lymph node in neck (scan results next week). My nurse practitioner decided to do some blood work. My CH50 was abnormal so she referred me to a rheumatologist. After examination he said he thought it was fibro. He ordered labs and xray. The clinic has an app that sends me an email when new information about my account is posted. I received my lab results yesterday and today. I will post them and see what you all think. I appreciate your opinions and experiences.

Sed rate 12 mm/hr
Creatine 30 u/l
RF <10.0
Uric Acid 3.0 mg/dl
Vitamin D 50 ng/ml
ANA Reflex 1:80

The only one that I see as abnormal is the ANA. I read only that is considered low positive or normal.

Post Edited (amyl4500) : 1/11/2017 6:39:18 AM (GMT-7)


Lynnwood
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Date Joined May 2005
Total Posts : 7155
   Posted 1/10/2017 12:10 PM (GMT -7)   
Lupus is not diagnosed by bloodwork alone, but then neither is fibro. The bloodwork is only part of the picture, the rest is provided by your symptoms and circumstances. Check out Lupus 101 for more details.

I hope your rhuemy is meeting with you soon and providing some treatment that will get you feeling better!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 6
   Posted 1/10/2017 1:22 PM (GMT -7)   
Thank you. I have read over that. I have some of the symptoms as well. I was told 10-11 years ago I was borderline Lupus but not enough to diagnose, so he diagnosed me with Fibro and said there is nothing I can do for you. I saw another physician who put me on 4 diff. meds and I got better and a few years later I weaned myself off all but 1, due to job loss and could not afford them all. I have done pretty well the past 7 years, although the last year I seem to have gotten worse again.

I have new blood work results that have been added to my patient profile according to the app.

ANA Positive
Homogenous Pattern 1:160
C-Reactive Protein, Quant (CRP) 0.800 mg/dL (says normal range 0.00-0.500)

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7155
   Posted 1/10/2017 2:07 PM (GMT -7)   
What meds were helping you? Sometimes they decide between fibro and Lupus depending on what meds we improve with. For instance, Prednisone generally helps Lupies, but rarely does anything for people with Fibro.

When do you see your rheumy again?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 6
   Posted 1/10/2017 3:09 PM (GMT -7)   
I see him the 25th. The previous Dr. prescribed adderall, klonopin, cymbalta and one more that I can't remember. I am having things happen this time that didn't before. Like today at work I had to work on getting 551 envelopes stuffed with 8 pages of paper (trifold). My hands are hurting and tight feeling, knuckles are red. Finally my boss asked the other girl in the office to help me.

In the summer when I am out in the sun I do not get the butterfly rash, my nose seems to be the only place on my face that burns.

My lower back feels really tender sometimes, to the point if someone touches it I jump. I get sharp pains in my knees and elbows.

Seem to be having more headaches than used to, sometimes like a migraine.

If I am up on my feet a lot I spend the next day on the couch with heating pad. My hands and feet feel what I call puffy and tight.

I have been keeping a journal with how I feel good/bad each day. It is hard to remember everything it seems.

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 6
   Posted 1/10/2017 3:21 PM (GMT -7)   
I meant to add that I have had recurrent sinus infections for the past year or more. Have received numerous steroid shots and antibiotics to treat them. Right lymph node stays swollen, size varies, but never fully goes away. Have been sent to allergist with result of "its not allergies" causing it. ENT said I had a swollen concha bullosa, which he removed. Sent to surgeon to see if needed biopsy of lymph node, results were "it is swollen, but no abnormalities seen". So still no answer to why I stay sick with what appears to be sinus infections a lot. Have been on Allegra-D for over a year as well, was taken off and prescribed 30mg of sudafed twice a day for 16 days and antihistamine - Xyzal 5mg.

Also, ears have been retracted and contain fluid for at least 2 months now. My nurse practitioner does not understand why I am not getting better that is where the blood work began.

Post Edited (amyl4500) : 1/10/2017 4:18:24 PM (GMT-7)


Dustmite
New Member


Date Joined Jan 2017
Total Posts : 13
   Posted 1/15/2017 3:28 PM (GMT -7)   
Your creation level is very low. Mine is 53 and I have stage 3 chronic kidney disease. Make sure you get that creation level checked out I think its quite low and its suppuse to be high.

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 6
   Posted 1/18/2017 8:27 AM (GMT -7)   
The rheumatologist has rescheduled my appt. for 1/26. I have had more bad days than good. I had vertigo a few times since last dr appt. The Vimovo he has me on has caused what appears to be petechiae (sp?) on my upper right thigh. Tried to call them yesterday and they are out until tomorrow. I had a really bad headache and nausea Sunday, what I would call a migraine. I do not feel well and it is affecting my work. I am trying not to call in sick so I can save sick time in case I need it.

I will post what rheumy says after appt. on 1/26. Thank you for your responses.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7155
   Posted 1/18/2017 10:52 AM (GMT -7)   
I know the 26th seems a long way away, but it's really not. Just hang in there and do the best you can!

Take your list of symptoms, by date & duration they occur if you can. I find if I take 2 copies, the Dr can read one and I can follow along on my copy.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 6
   Posted 1/18/2017 3:08 PM (GMT -7)   
Lynnwood, good idea. Thank you
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