Where do I go from here...

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New Member

Date Joined Aug 2009
Total Posts : 2
   Posted 8/18/2009 9:08 PM (GMT -6)   
I need help, not sure what to do next.  I've been suffering with the following symptoms for the last 3 to 5 years:
1) difficulty taking deep breaths (feels like I'm hitting a wall).
2) whistley breathing
3) low grade fever
4) uncontrollable acid reflux (took 2 prilosec a day for a while)
5) chest pain (seems muscular on the left side, and lots of popping on that shoulder)
6) random bruises on my knee caps, fingers, and sore/tender spots on my ribs that last a day or two
7) red dot-like splotchy marks on my skin when I put pressure on it, for instance carying a laptop case over my shoulder with a shirt on, the skin will be little red dots all over it afterwards due to the weight on it (not a lot of weight either).
8) neck soreness
and as of recently:
  9) stinging/burning/itching all over in the heat or if I get anxious about something
  10) a sore spot in my mouth for over a month that comes and goes
  11) 2 lymph nodes on the left side of neck (where sore) (and under earlobe) are just barely enlarged
  12) fatigued heavily, lightheaded and vertigo when I stand up a lot
  13) lost 35 lbs in about 4 months not trying.
I went to a rheumy a couple of weeks ago.  My ANA came back positive with 1:640, but with the only other strange thing being my CRP at 0.6 instead of in the 0 to 0.5 range.  My ESR was 1, complement 3 was 130 and complement 4 was 19.  DNA and ENA negative.  The only other out-of-range tests were LIP index of 1 and ICTERIC index of 1, but who knows what that even means...
I don't want to self diagnose, but after fighting these progressive symptoms for 3+ years, and visiting every specialist known to man, I'm so frustrated and don't feel I have a choice!  Does anyone have any suggestions??  My quality of life like this is slipping away...

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 8/19/2009 9:06 AM (GMT -6)   
Hi Supernat, welcome to the forum.  I can completely understand the limbo you're in right now. I went for 10 years with symptoms until I got a diagnosis.  You have a rheumy which is great!  You're ahead of the game already.  Do you feel that they're being a good advocate for you?  Are they proactive and determined to figure things out?  If so, that's wonderful.  Stick with them and you will eventually get the treatment you need.  If not, drop them like a sack of potatoes and find a new one.  Don't waste time with a specialist that is dragging their feet.
Your symptoms do sound like Lupus, but they can also be many other AI diseases.  That's why it takes so long to get a diagnosis.  They have to be so sure of the disease in order to treat it properly. 
Have you had any blood clotting testing done?  Your bruising and red splotchy marks perked my attention. 
HOw is your pain?  Make sure you're getting medication to treat any pain you have.  Keep a diary of all your symptoms and take pictures of any rashes you get.  We're here for you any time, okay?  Please keep us posted,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 8/19/2009 9:57 AM (GMT -6)   
Hi Supernat,

What did your rheumy tell you about the results of your blood work? I hope he or she had you come in to discuss your labs. You're in a tough position and I relate and sympathize with you. Ginny's right about the importance of feeling like your rheumy is a good advocate for you. Many of us had to try several rheumies before we found one that is a good fit. 3 in my case.

We've all learned that with an AI disease, you have to take charge of your own health and not sit around for your doctor to do something. It can be so frustrating. Make sure you have a frank conversation with your rheumy. I always take in a typed list of questions because when the doc sees that, they usually sit down and listen. And I don't forget my questions. Treat this like a school project, and as Ginny advised, keep a journal of your symptoms, take photos of bruises or sores, and walk into your doctor's office confident and prepared. You'll get more attention from your doctor if you do that. If that doesn't work, find another rheumy. I'm in the process of going to #4.

I'm rambling, sorry, but sometimes my mind doesn't work like it used to.

Good luck. Come join us here. You'll find lots of great people and you might even get the support that you need!


P.S. -- You already have your typed list of symptoms. Good for you. Don't give up.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

New Member

Date Joined Aug 2009
Total Posts : 2
   Posted 8/19/2009 7:26 PM (GMT -6)   
Thanks, I appreciate the positive reinforcement. That's something I haven't had for EVER. Everyone is like "Oh you're just turning 30, your body is changing, etc..." as family members have said or "It's in your head, your right hand is tingling too, you're just concentrating on your left hand" as one doctor told me. Most of the doctors I've seen wanted to concentrate on one symptom too.

I think he's a good doctor, but he just wants to keep an eye on it. He wasn't really proactive about moving forward in my current state. He did go over my blood work and answer my questions, and he was quick to do the Lupus tests to begin with (something I had not even considered). My chest pain is very minor, more of a soreness really. The difficulty breathing is the worst part. It's a constant reminder something is wrong...

Anyway, thanks for the advice! I do need to keep a journal. I'll post any updates. Like today I found out 2 family members have Lupus and one had Sceleroderma...so maybe my doctor will find that useful.

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 8/19/2009 7:45 PM (GMT -6)   

I agree that the doctor will be interested in learning that you have family members with lupus and scleroderma. I'm glad you've decided to join the forum, and you don't need to post updates - chime in any time. We're all pretty good about venting, so feel free any time you feel like it.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

cookie monster1
Regular Member

Date Joined Aug 2009
Total Posts : 41
   Posted 8/20/2009 3:46 PM (GMT -6)   
Hi supernat, welcome to the forum....I am pretty new and so far it has been great for me I hope it is helpful to you also.
I agree with Ginny it does sound like Lupus but it could be one of many AI's.  Did your doc check your dsANA (double strand) if so how did that come back?
My hubby is waiting to see his 3rd rhuemy and it is very frustrating....but keep your head up hi and be persistant at your aptmts and do not be affraid to ask any questions. 
I would also request copies of all your labs etc... and keep them in a file that way you have them on hand....I have gone back and requested them from my hubbys docs....sometimes they charge a fee...but it is worth having them.  and i have found if I ask for a copy while i am at the apt with him most of the time they will give me one with no charge.
Pictures are important even if it is with your cell phone that way you always have them with you and it is good to take a list of questions as pattylatty mentioned so you don't forget anything.
I don't know how it is where you live, but we are in AZ and it takes 2-3 months or longer to get in as new patient with a rhuemy....if you are questionable at all about the one you are seeing know you may just ask your primary care phys if they could recommend one and get an apt set up with them just incase you decide this one is dragging her feet....if you end up not needing it you can just cancle it.  It has been terrible for us....as i said we are on our 3rd doc and it has been a long wait in between.
What did your doc say about the labs you already had done?  I would suggest if they just want to watch it that you might find another doc unless they can give you good reason for just watching it.....you are the only one who can really look out for yourself....so if you don't like what they are telling you or feel uneasy about anything address it and if they don't work with you move on to another rhuemy.
take care and keep us posted....
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