Weird test results? I guess? Going out of my mind

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mandeloo
New Member


Date Joined May 2011
Total Posts : 14
   Posted 5/17/2011 5:26 PM (GMT -6)   
Hi blush

I have been lurking and answering some but this is the first time I've posted a new question.

I saw my doctor for unexplained hair loss about a month ago. At the time, sleeping all day and aches n pains didn't occur to worry me since I've been dealing with it so long. Anyway he did tests where my ANA was positive and speckled so off he sent me to the rheumy. My appointment is Thursday.

In the meantime I had to see a neurologist for excruciating migraines. I couldn't take it anymore. He decided to do a comprehensive ANA based on my original test results. It came back that I had a high titer of anti-RNP in my blood with the absence of all other antibodies (anti-DNA was only 1 so not worth looking at.)

Anyway I know something is wrong. However the markers for inflammation weren't elevated AT ALL. My sed rate was only 8 and the CRP was like 0.4

This makes no sense. The only thing I can imagine is that I've been on so many NSAIDS that it's just not showing. Is that possible?

My "symptoms" are:

Extreme headaches
Feeling tired/fatigue (it's actually not overwhelming)
Hair loss
Stomach pain after eating (some foods make it VERY uncomfortable)
Upper back ache
Bad neck ache
Sciatic joint problems acting up again
Abnormal MRI and MRA (either small communicating vessels/arteries OR 2-3 mm aneurysm; possibility of pseudo tumor)
Some muscle weakness
Heavy feeling in the body, over all achiness
Itching skin on flank
Face burns when sweating, especially out in the sun

I'm always laying around because I just don't feel good. My husband and children still think I'm just lazy. Is it possible I am? Can this be all in my imagination? Sorry for the long rant.

southerndiva
Regular Member


Date Joined Apr 2009
Total Posts : 122
   Posted 5/17/2011 6:07 PM (GMT -6)   
Don't mean to scare you but many of your symptoms are indicative to lupus or an autoimmune disorder. Too bad your husband and kids couldn't be in your body for just one day so they could understand how you feel. I suggest that you write down your symptoms and issues before you go to the rhuemy on Thursday to make sure you don't forget to tell them anything while they are trying to get a diagnosis. Take pictures of any rashes as well. Hopefully you will get a good rhuemy and get on a treatment plan so you can get on the road to wellness. Keep us all posted.
Hugs and Angels,
Lynnette

mandeloo
New Member


Date Joined May 2011
Total Posts : 14
   Posted 5/18/2011 1:16 PM (GMT -6)   
With all of the horror stories I've been hearing about rude Rheumatologists I'm scared to death to see mine for the first time.

Yes this is my first set of tests.

I just remembered I also have sores on my head (I tend to pick at them) and th most horrible cracked heels, toes and balls of the feet. This just started with my feet. Its awful! I'm 29 and my feet look 90! (at the bottom)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/18/2011 5:45 PM (GMT -6)   
My rheumy is very nice. So not all are rude.
I've got terrible cracked dry skin on my feet too. I'm using an emu oil based mosturizer (Blue Goo) on my heels. It works good as long as you use it regular. Found it at Walmart cheap.
Joy

mandeloo
New Member


Date Joined May 2011
Total Posts : 14
   Posted 5/19/2011 1:23 PM (GMT -6)   
He was a really nice man but didn't go by my symptoms to diagnose me. He relied strictly on the blood test results. He said "based on your blood test results you don't have an autoimmune disease but 3 yrs is a long time to have aches n pains so you need more tests and xrays"

I guess the anti RNP titer being high wasnt significant. He's running the same silly tests I've already had! mad mad mad it's just wasting money. He said I had alopecia areata and sent me to a dermatologist. He didn't really stay with me long, about 8 minutes. I guess now I just wait for a really bad thing to happen. I do admit I feel tOns better today from taking Vitamin D (I'm deficient) and the B-12. Maybe I just have a vitamin deficiency.

southerndiva
Regular Member


Date Joined Apr 2009
Total Posts : 122
   Posted 5/20/2011 4:42 PM (GMT -6)   
Wow, a whole eight minutes!! Hardly think this is the person you need to help you get on the right path to recovery. Honestly, what can you determine in 8 minutes with an individual. I saw my Primary care physician this last week for my yearly exam and he spent more than an hour talking to me about anything and everything. I love this man! I felt bad about taking up so much time but he doesn't care. He figures in order to address every patient's needs you have to spend time with them to understand everyone's individual probems. And this is just my primary doctor. Have a great rhuemy too! Be your own patient advocate and fight for your health!!
Hugs and Angels,
Lynnette

mandeloo
New Member


Date Joined May 2011
Total Posts : 14
   Posted 5/20/2011 6:44 PM (GMT -6)   
it may have been 12 minutes!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/20/2011 7:09 PM (GMT -6)   
I've got a record a whole 5 mintues after a four hour wait!
Joy

mandeloo
New Member


Date Joined May 2011
Total Posts : 14
   Posted 5/20/2011 7:11 PM (GMT -6)   
should I get a second opinon or just let sleeping dogs lie?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 5/20/2011 7:37 PM (GMT -6)   
If he's running tests and trying to figure out things, he's doing his job and you might as well see what he'll come up with. My hope is that once he has more solid information he'll be able to spend more time talking it over with you. Sometimes all they need is a few minutes to discover they need a lot of test information before they can really address your issues. So I guess I'd give him a little time to do his thing before spending my money on a second opinion.

Of course, all that is predicated on him having given you a follow-up appointment. If he is truly done with you, yeah, a second opinion sounds reasonable!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

mandeloo
New Member


Date Joined May 2011
Total Posts : 14
   Posted 5/20/2011 10:46 PM (GMT -6)   
It's my understanding that some believe that finding that one antibody indicates you have more than one autoimmune disease but none of them have caused enough symptoms to identify itself as your primary diagnosis.

Then there are some that believe it's a disease unto itself called MCTD.

Then there's my doctor who sent me for a hepatitis panel! (along with the other stuff) After my liver looked super healthy in my lab results! So the Internet is confusing me, the doctors are confusing me... I just don't want to be the person who waited too long to help themselves. I'm actually pretty good at that already.

I just have this nagging feeling that this one finding in my blood is trying to tell me something. Something like "be on the lookout, because it's on it's way... get as healthyish as you can now because in a short time you're gonna be really sick!"

ya know?

LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 5/26/2011 8:36 AM (GMT -6)   
Hi Mandaloo, I have been off this forum for a long while as I have moved and faced many trials. My blood work rarely shows the inflamation markers, even when I am sick as a dog. I'm so sorry your family doesn't get it. Eventually they will have to because this disease is a long haul. Keep talking to those who understand and have empathy for you. Bless you. Loved
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, June 22, 2018 2:52 PM (GMT -6)
There are a total of 2,974,564 posts in 326,188 threads.
View Active Threads


Who's Online
This forum has 161253 registered members. Please welcome our newest member, A_Warrior's Queen.
288 Guest(s), 7 Registered Member(s) are currently online.  Details
imagardener2, Kent M., The Dude Abides, Girlie, lymedriven, TheJay, Michael77