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Avatar universal

Working (and WAITING) to get a final diagnosis!

So, I've been having all sorts of issues lately and I can't help but want to blame them all on a possible lupus diagnosis. Complicating matters is the fact that I've been out of work and uninsured for about 7 months and my next set of benefits don't kick in for another 3 months! That's a LONG time to wait to get any treatment! The symptoms and problems keep building up. What to do!?
Here's my history so far. I had a high C-reactive protein test and ANA screen of 1:640, homogeneous pattern. Anti DS DNA came back normal, though. I've had joint pain, swelling and stiffness for years, which prompted the tests, and a weak (maternal aunt) family history of Lupus.
Lately I've been having very low blood pressure readings (last 2 days ago was 102/60), a rash between my breasts that's raised, but broad and very "angry" looking, weakness, fatigue, hand and foot swelling, increased urination (even waking me at night), insomnia, nervous jitters and hand shaking, muscle aches, and headaches. I don't have the typical "butterfly rash", per se, but my skin is doing horrible things all over, aside from the previously mentioned rash.
I would love nothing more than to go get checked out, but I still don't have insurance and as I've never been clinically diagnosed with Lupus, I don't want to hand the doctor a "canned" diagnosis or spoonfeed it to them. How can I get a thorough and attentive workup for what I THINK is wrong and so that I can just feel better without taking forever and multiple overwhelming doctor bills? Also, because I haven't yet been clinically diagnosed, I'm thinking that even if I were to be blessedly diagnosed with SOMETHING (so that there can be a treatment), I run into "preexisting conditions" territory and it will screw me out of getting help in the future. What can and should I do?! I feel horrible and anxious!
5 Responses
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1464587 tn?1307491605
This may seem weird but is there any possibility you might be pregnant? How long have you had these syptoms?  Lupus definitely is frustrating to diagnose and treat, and many diagnoses come out wrong anyway. So my heart goes out to you..... my diagnose took 8 years...... and now I have had something MAJOR going on since september and the doctors don't have a clue and I'm scared..... nothing is showing up in the test to say its my lupus but I don't know what else it be and it got worse with prednisone...... maybe lyme disease.... maybe not. But I just wanted to let you know my first thought after reading your post was maybe your pregnant.
Helpful - 0
2 Comments
Call your local ADRC listed in you phone book. It's free and part of your county. They have many good programs for getting you insurance, money for medicine and a living allowance. So many people don't know that they exist. You want to speak to an elder benefit specialist. They are tied in with your courthouse, are not welfare, nothing to do with social security.
Call your local ADRC listed in you phone book. It's free and part of your county. They have many good programs for getting you insurance, money for medicine and a living allowance. So many people don't know that they exist. You want to speak to an elder benefit specialist. They are tied in with your courthouse, are not welfare, nothing to do with social security.
434278 tn?1324706225
It sounds like your primary physician thinks something autoimmune is going on.  I'd go back to him/her and see if they will try plaquinel or prednisone.  If you do the plaquinel, you will first need an extensive eye exam to determine a base line for your vision.  Then every 6 months after that.  

Then, I'd do what you can do.  Eat right and try to get rest.  Try not to stress about anything.  Cut back or elimate sugar and drink lots of water.  And stay out of the sun.  If exercise causes a flare, don't do it.  Every time I climb stairs, I have a flare.  So I avoid stairs at all cost.  

Many of us here know how frustrating the dx process is and are praying for you.  

If your dr. does another ANA, spend time in the sun prior to your test.  
Helpful - 0
Avatar universal
Fast Forward a year and a half! I am quite frustrated with rheumatology right now. I've finally been able to have my healthcare updated and had an elevated SED at my primary physician's, which led to a visit to the Rheumatologist's where I had another positive ANA of 1:640. All of the antibody tests came back as "WNL" so there's no patter, no speckling, and the nurse told me there's no reason for follow-up because everything looks "normal". I'm still having pain, still having the same angry rash on my chest, still feeling achy and tired all the time and don't know what I should do from here. I'm on Voltaren for swelling and aches, but it's not touching it and I've gained about 10 lbs in the past month, since starting it. (I would rather blame the holidays, though). I've also recently been put on Atenolol, 25 mg for sinus tachycardia and have been on Effexor XR, 75 mg for about a year for anxiety.
I'd like to drop the Voltaren and find out what I can do to get on with life now. I've joined Curves and Weight Watchers, to see if I can lose about 30 lbs, but I usually pay for my workouts the next day.
Anyone with advice on what I should do now? Do I keep going back to the doctors and rack up a bill with what always ends up being bits and pieces of information that doesn't go together to make a diagnosis? It's been years that I've been dealing with this and nothing  yet but piles of bills and frustration. Grr.
Thanks in advance! I felt like venting and asking around.
Helpful - 0
471161 tn?1317190950
I wish you the best.  I am posting so this will push your post to the top and maybe someone can help.  I know if you go directly from one insurance to another they have to cover pre-existing conditions but there is a limit to how long you can be without.  Are you on any medication right now like Prednisone or anything that will keep you from getting worse until you can get insurance?  Are you getting it through an employer?  The reason I ask is they don't make you have a physical.  Like I said, pushing this post to the top will get more people to see it and hopefully someone knows the exact amount of time you can be without insurance and still have pre-existing covered.
Good luck and God Bless,
Joni
Helpful - 0
Avatar universal
Sorry to hear about everything.  You have my sympathy and well wishes.
I am still awaiting diagnosis too as my symptoms say lupus but so far only supportive blood test is ANA 1:1280.  I wish I had THE ANSWER for you but all I can offer is what I know.  

Since Lupus is a long term condition and requires frequent checkups, etc I think you are right in avoiding the "preexisting" label if it can be avoided.  Just be sure not to put yourself at too much risk ie if you are really feeling bad don't avoid going in.  You may be able to find a doctor that will work with you to not put the lupus down as the diagnosis quite yet.  

That being said depends on how bad everything is on whether you can wait for a workup.
The main concern with lupus is when it turns on critical organs ie kidney, heart etc.  Do you know if they ran any kidney tests - blood urea nitrogen (BUN) or creatinine?  This would at least give you a starting point for evaluating how serious everything is.    

Ideally you should obtain copies of all your bloodwork and keep a copy of all the tests.  The reason I say this is my regular doctor lost my medical chart and I have had a hard time tracking down the lab that ran the test and getting copies of the results from them.

The best doctor to evaluate you is likely an internal medicine doctor who is specialized in rheumatology (study of joints, muscles).  This usually requires a referral from a general doctor.  

It often time takes a long time before lupus diagnosis is made so if the increased urination is persistent it may not hurt to see a general practitioner and at least have a urine sample run.  Especially with lupus kidney problems are easier to tackle early on.
Could just be a urinary tract infection and need antibiotics.  

Also remember rest helps so much with lupus.  Since I found out that lupus may be the culprit I have been trying to be very proactive about resting whenever I feel the need.  This is not easy since I have 3 kids but I can tell a big difference when I rest and take a nap versus pushing myself to try to keep the house clean (as if my house is ever clean).
I do not sleep well at night so even if all I can do is rest for 15 minutes during the day I take it.    Figure out what seems to help you to have a "good day" and then really strive to do that.

Also for help with diagnosis down the road keep a simple journal of symptoms, general description of how you feel.  If you can monitor blood pressure and see if that correlates into how you feel may not hurt either.  It may help down the road when they are sorting through what it could be.  

Not sure if any of my ramblings have helped you but know that they are other people who can relate.  Keep posting questions and updates.  
Best wishes.

Helpful - 0

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