New and In Need of Guidance

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TheDeliCreep
New Member


Date Joined Apr 2016
Total Posts : 9
   Posted 4/2/2016 2:46 AM (GMT -6)   
Hi there, it's the deli creep. I don't really know where or how to start with all of this so I suppose I'll start with the first onset of symptoms. I've been allergic to the sun for as long as I can remember and have had mouth sores since about age 10.
about 4 months ago, after dealing with about a year of gradually worsening fatigue, I noticed that I had been running a low-grade fever for a little too long to be considered... Erhmm.. Normal. It had been 3 weeks, running from 99.6-~101. I noticed just a few days after that, to my horror, there was an extremely thinned patch of hair near the top of my head. It was sore to the touch. It's been a swift, downhill slide from there.
Fast-forward to now and I have had a malar rash on my face twice, when everything else gets worse including my hair thinning, fever spiking, sun sensitivity worsening, cold intolerance, a rash that looks like livedo reticularis, a scalp so sore I can't lay my head down, and the inability to function for more than 6-8 hours at a time, my fingernails look WACK, and mouth sores galore.
I just recently got Medicaid and I'm losing it May 1st. I've been to a primary doctor and she was ready to test my ANA, c3, c4, sed (?) rate for my inflammation, and also every other autoimmune disease since she knew time was of the essence and it was better to be safe than sorry. Well everything came back normal but she referred me to a rheumatologist anyhow. He wasn't very receptive but did diagnose me with Reynaud's. In light of everything going on, he ruled it unrelated. He ran my ANA, c3&4 once again and.. All normal.
I have a new bald spot even worse than the one before (completely hairless and smooth), fever is at a constant ~100 (not the worst but still), I wake up tired and weak, I'm dizzy, my right arm falls numb and cold while I'm asleep.. Everything else has been taken up a notch or two.
Dr gave me amitriptyline and has sent off more blood work for my vitamin D, b12, and iron levels. She said she's seen this many times before and my ANA (among other things) will eventually turn up abnormal and we can finally move on from there and she's frustrated for me and this is the best she can do for general pain and fatigue.
There's more to this story but I know I've already overloaded.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/2/2016 4:02 PM (GMT -6)   
I wonder if the rheumatologist can start treatment on you? Lupus is diagnosed by a list of 11 indicators. You must meet 4 out of the 11 to be diagnosed with lupus and blood work is only one of the 11. You sound like you meet many of the symptoms, but I'm not a doctor.

Maybe you need a different rheumatologist if he's holding off treatment based only on blood work.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

TheDeliCreep
New Member


Date Joined Apr 2016
Total Posts : 9
   Posted 4/2/2016 5:15 PM (GMT -6)   
I have a friend with lupus and her rheumatologist sounds great and I'd love to see him but unfortunately I only am able to see one that I am referred to by my primary Dr and I don't think I'll be able to get referred again. I feel like half way through the visit, I could tell he made up his mind that it wasn't lupus and i couldn't really talk about much at all. I have Medicaid and I'm losing it May 1st so I'm running out of time. I hope to get insurance again soon..

Any advice for scalp pain/ hair loss?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/2/2016 9:00 PM (GMT -6)   
Start wearing a sun protective hat and take biotin pills.

Tell your primary that you want a different referral and that the rheumatologist wouldn't treat you properly for your issues.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

TheDeliCreep
New Member


Date Joined Apr 2016
Total Posts : 9
   Posted 4/2/2016 9:58 PM (GMT -6)   
I don't want to hurt anyone's feelings but I will try and talk to her about getting a new rhuem. I hate to keep bothering but what are your thoughts on the amitriptyline?
I need a nap.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/2/2016 11:09 PM (GMT -6)   
Amitriptyline, known more often as Elavil, is a rather old anti-depressant that is no longer used in the USA. (I'm not sure where you are.)

Is the Dr giving you this to address your symptoms?? (If so, I don't understand.) Or did she also diagnose you with depression?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

TheDeliCreep
New Member


Date Joined Apr 2016
Total Posts : 9
   Posted 4/2/2016 11:52 PM (GMT -6)   
She was talking about it helping my headaches and fatigue. I'm so lost and confused with all of this. I'm under 20 and in Alabama.
I need a nap.

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 4/3/2016 8:20 AM (GMT -6)   
I agree you need to get her to agree to start you on meds.

I was the same as you the other day. I expressed to her how much it was impacting on my life and that I needed medication, after years of suffering. I'm now on a lupus med since Friday.

The only positive I got was lupus anticoagulant and according to the info on this site, having a negative ANA is typical with a positive anti-coag.

So ALL your tests are negative?

Mine only showed positive after several years of testing.

TheDeliCreep
New Member


Date Joined Apr 2016
Total Posts : 9
   Posted 4/3/2016 12:11 PM (GMT -6)   
Yes, all of my tests apparently came back normal. I've only been experiencing most of my symptoms for a few months so I guess it'll take some time. Until then I guess I'll have doctors feel my bald spots, look at my purple fingers, take my fevered temperature, look at my rashes, look me in the eye and tell me that they don't want to give these high-risk medications to a perfectly healthy young person and send me on my way in tears.
The rheumatologist even had enough nerve to send an email to my primary saying he was concerned about my psychological state because I was anxious.
I hope the amitriptyline does SOMETHING to help. I just wonder how much I have to fall apart to get a doctor to listen to me. Am I going to be completely bald?? I'm so lost, angry, and confused... It's depressing.
I need a nap.

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 4/3/2016 12:21 PM (GMT -6)   
That's exactly how I've felt, and feel!

I ended up in tears this week with her because I'm so fed up with it all. Wonder if she'll tell my doc the same?!

Amitriptyline might help with your sleep and pain but not with any disease. You really need to push. Has she discharged you?

I need a nap too.

TheDeliCreep
New Member


Date Joined Apr 2016
Total Posts : 9
   Posted 4/3/2016 12:31 PM (GMT -6)   
I'm seeing her in about a week and a half. I have really bad social anxiety and I'm no good at speaking up for myself. I really thought I wasn't going to get any sort of medication until she told me at the very end and I don't want to make her think I'm being ungrateful. I'm seeing the rheumatologist on the 26th and I'll probably have a better time standing up for myself then because he's definitely not as nice (or anything) as my primary.

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 4/3/2016 12:47 PM (GMT -6)   
Keep having the tests and best of luck.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/3/2016 5:36 PM (GMT -6)   
Deli,

You might want to ask specifically about Plaquenil - it helps slow the progression of auto-immune diseases and isn't a "high-risk" med -- it's actually an anti-malaria med used all over the world.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

TheDeliCreep
New Member


Date Joined Apr 2016
Total Posts : 9
   Posted 4/3/2016 6:04 PM (GMT -6)   
I will definitely be asking about that. Thank you!

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 4/4/2016 6:50 PM (GMT -6)   
Sorry you're dealing with the frustration of diagnosis, doctors can definitely make you question your sanity during this process no doubt. I took Amitriptyline many years ago for headaches, I believe it is used because it is a very cheap medication, but there are much, much better options out there now. I would agree with the others, diagnosing or treating lupus is not determined solely on a positive ANA, I would definitely ask your primary about starting Plaquinel, it is the base drug used to treat newly diagnosed lupus patients. On that note, when you say your doctor is running an ANA, do you know if they are running the straight ANA or the ANA9 panel? The ANA9 is fairly new, so if the doctor is not very familiar with lupus they many not know this is the proper test to run. It is much more detailed and will offer a wider range in order to determine if you have lupus.

Best of luck at your next doctors appointment.
Hugs,
Melissa

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/4/2016 7:47 PM (GMT -6)   
ANA9?? There is nothing found when I search on this. Can you point to what you are talking about? Neither the Lupus Organization nor the College of Rheumatology have anything about this on their website.

Or do you mean the combination of ANA and the other complement and protein tests? Many doctors do not run complements/proteins because of the additional costs and because they really do not provide any additional information that the ANA and the symptoms don't already provide.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 4/4/2016 6:54:22 PM (GMT-6)


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 4/5/2016 10:40 AM (GMT -6)   
Hi Lynnwood,

Yes, this is what's run, if there is a way to upload a file I'd be happy to share the actual labs results from my lab from my doctors office. It is a combination of 9 different compliments. Here is a copy of my last results ran on 3/8/16. I have had lupus for 20+ years, in years past when my ANA was drawn it would come back negative or if it was positive it would have a result of 1:60, 1:120, 1:1240 something of this nature, now I guess because It's been proven I have a positive ANA with spectacled pattern my doctor runs this panel. From what I have read if you do not have lupus your numbers will be zero, there is no in between. I am not in the health profession by any means, I simply am going by my experience and that of my son who also has lupus.

ANA 9 on 03/08/2016

ssDNA - 35.00 Range: 0.00-99.00 - U/mL
dsDNA - 7.00 Range: 0.00-40.00 - I.U.
Sm - 3.00 Range: 0.00-89.00 - U/mL
RNP/Sm - 2.00 Range: 0.00-83.00 - U/mL
SSA (Ro) - 8.00 Range: 0.00-91.00 - U/mL
SSB (La) - 3.00 Range: 0.00-73.00 - U/mL
Scl-70 - 11.00 Range: 0.00-32.00 - U/mL
Chromatin - 12.00 Range: 0.00-99.00 - U/mL
Centromere - 0.00 Range: 0.00-99.00 - U/mL
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

TheDeliCreep
New Member


Date Joined Apr 2016
Total Posts : 9
   Posted 4/5/2016 2:33 PM (GMT -6)   
So it's looking good about the new insurance and getting a new rhuemmy. Any advice on what I should say/tell/ask? I get super nervous when meeting new people, especially with such critical circumstances as these. I'm trying really hard to not be anxious
Also, it almost looks like I'm getting Terry's nails... What's up with that??

TheDeliCreep
New Member


Date Joined Apr 2016
Total Posts : 9
   Posted 4/6/2016 7:01 PM (GMT -6)   
What a miracle! Rhuemmy wants to start treating me for lupus with Plaquenil! I don't know what made him change his mind like that but I'm so happy I've been crying tears of joy 😂
I need a nap.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/6/2016 8:03 PM (GMT -6)   
Glad to hear this. It will take a few weeks for it to kick in, but it will help.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 4/7/2016 12:09 PM (GMT -6)   
That's great news! Happy you finally are getting through to your doc.

Hugs
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