View Full Version : Not sure what to make of my symptoms!

10-03-2008, 10:21 AM
Hello all,

I'm new here and I'm still not sure I'm in the right place, but thought I'd check. I've got a whole list of symptoms that I never even really considered related until recently. I'm going to follow up with my doctor, but in the meantime I thought I'd check here and see if this sounded familiar to anyone.

Here's my list (from top to bottom):

- Migraine Aura: About 5 years dx with migraine. I mostly get aura, loss of vision/hearing disturbances, and occasionally the icepick headache.

- Neck pain: Tons of issues with pain/grinding in my neck, for 10+ years. Had a cervical MRI recently for this and the headaches and my neurologist says I'm perfectly fine, except a cyst in my sinuses.

- Shoulder/left arm/upper back: Lots of pain/stiffness here, and numbness in my arm. I've always attributed it to an old shoulder injury and poor posture, but nothing seems to help. Dealt with this for 15ish years.

- Heart palpitations: I had a heart murmur when I was a kid but it hasn't shown up since; however, I get palpitations a lot. I know this is normal, but my mom recently was dx'ed with atrial flutter after having a stroke, so I've been a little concerned.

- Knee pain: This just started back in April. Pain so bad I can't walk, on and off very randomly. Will hit for a couple days, getting worse/subsiding throughout the day and then in a few days it's gone. I've had about 3-4 bouts of it since. Saw my doc about this and I got bloodwork done. Tested negative for RA, no inflammation, sed rate was ok, and no lyme disease. Told me to take NSAIDs and come back if it was still a problem.

- Hand pain: this is really recent, like within the past month+, and what ultimately brought me here. Each morning, like clockwork, I wake up and my hands really hurt. Fat, swollen, painful, and specifically the small joint on the end of the middle finger on my right hand. That specific joint feels exactly like I broke it. It's sore to the touch, feels agonizing and I can't bend it. But, give it a couple hours and it's 100% back to normal with no pain. I swear I feel like I'm going crazy. I've tried splinting it, taping it, etc. to no avail. A search on this returned a hit for a lupus forum, and reading up on it brought me here.

- Rash: this is another thing that I never really connected. About a year ago my b/f mentioned a spot on my back and I was surprised. I'd never noticed it, but apparently it had been there for years from what he remembered. It was crescent-shaped, about the size of a silver dollar, more brown than red (like a cafe au lait spot). The edges were darker, and it was more clear toward the center. The skin on top is sort of scaly but very finely. It's not itchy. When I went out in the sun it didn't get worse, but seemed to blend in more (probably because I was tanning to match it). I treated it with antifungal, thinking it was long-standing ringworm but it didn't clear. I meant to go have it checked out but forgot about it. Then I got a smaller one on my chest. Tried to treat it, never really went away. From time to time the skin will peel off but it comes back. Last night my b/f noticed I have two more on my back (the original one is gone). One is shaped kind of like a pair of lungs.

After reading all that through, I know it sounds like I'm a wreck! Sometimes I feel like it, and sometimes I don't. I'm only 28 years old, pretty active and healthy otherwise, and I should not be feeling this poorly. Sorry this is so long! I've realized there are other things too, but in the interest of time I won't mention them.

I'm going back to my doctor for a follow up about my knees and to tell her about my hands (and the rash) but I am sooooo afraid of being told that I'm perfectly fine and that it's all in my head. Argh.

Anyways, should I ask her to rule out lupus, based on these symptoms? If not lupus, anything else this might sound like? Any info is appreciated.


10-03-2008, 05:33 PM
Hi Briana...

Welcoming you with open arms...

Your rash may have been from Discoid Lupus Erythematosus (DLE)..it is a chronic skin condition of sores with inflammation and scarring favoring the face, ears, and scalp and at times on other body areas. These lesions develop as a red, inflamed patch with a scaling and crusty appearance. The center areas may appear lighter in color with a rim darker than the normal skin. Sounds like yours, eh?

Lupus?....Your symptoms could be a myriad of things. Lupus is a great mimicker of many diseases and all of them have to ruled out or ruled in....

You do have some symptoms that I have had, still do, as well as others have had...

Request the following test...
1. ANA,FANA (Fluorescent)-Anti-Nuclear Antibody
2. Anti-DNA
3. anti-Sm antibody-_Antibody to the Smith antigen
4. anti RNP-Antibody to the Ribonucleoprotein
5. anti-Ro,(=anti-SSA(=anti-Ro))
6. anti-La,(=anti-SSB)
7. Complement,CH50,C3,C4
8. aCL, aPL, lupus anticoagulant
9. BUN (Blood Urea Nitrogen)
10. Urinary protein, proteinuria, albuminuria
11. Platelets- blood cells that aid in clotting.

He may refer you to a Rheumatologist depending on the results of you tests.

Make a list of all your symptoms over the years to...leave out nothing. Obtain copies of your other test results and records from past doctors to have at your appointment.

Have you been treated for the hair loss, joint pain or rashes? If so, bring that information to your appointment too.

Know many of us had Lupus for years without treatment as it is hard to diagnose ..either they couldn't find anything, or diagnose it as something else. It is a hard disease to pinpoint...

Know they should be able to treat your symptoms regardless of a Lupus diagnose. He should be able to prescribe topical creams, anti-inflammatories, pain relievers and etc....

You hurt, you have physical symptoms, visual symptoms, so know, it is not in your head regardless of what anyone says. If any doctor says anything of the such..let your fingers do the walking through the Yellow Pages and find another. A good doctor is a hard find...

Keep looking for your wellness...

10-06-2008, 04:20 AM
Welcome brianala

How long have you been taking the NSAIDs? The doctor should have given you a time frame for how long it takes to build up in your system before you should notice an improvement. I think it's 3 to 4 weeks.

If you are not noticing any benifit by this time or if you are finding yourself to feel worse, please go back to your doctor and let them know that they need to try another drug.

I hope it does work for you.

For myself, I had a sudden on set of symptoms that started with my knee joints and foot pain.

It took a long time to find the right mix of drugs, but I did regain my ability to walk with out too much pain.

Do you have continued problems with swelling?

10-06-2008, 07:02 AM
Haven't been officially introduced as a "newbie" yet, but have had to write some replies...I'll go thru the intro process at some point...But until then... :)
While it was assumed I had Lupus way back in 1989 due to family hx and debilitating knee pain (dxd as connective tissue disease)...I was OFFICIALLY diagnosed by way of a skin biopsy in 1998 or so. I get the annoying rash on my joints mostly, elbows, knees, knuckles...with some scattered "spots" elsewhere. Never had it on my face. The rash is itchy and painful, as well as kinda scaly...and with scratching, can cause scarring (my hands are not pretty!) But, my dermatologist took a couple biopsies of my "spots", and they came back positive for SLE. I had positive ANA, etc blood tests at the time too, but the biopsies were the clincher for me. It's not a usual thing, being diagnosed through dermatologist...But I think (especially for those having trouble being officially diagnosed) this is a much-overlooked and underused way to go. Unfortunately, there are docs out there that have all the telling bloodwork staring them in the face, and just REFUSE to say the words. What are they so afraid of I wonder?? Don't they know how much of a relief it can be for a patient to actually have a "diagnosis" to put with their symptoms?? To know that they aren't crazy?? Anyhoo...for anybody who's undiagnosed...In addition to demanding some blood work...if you do get a rash from time to time...get a biopsy, if possible. It can't hurt...and maybe, just maybe...NOT CRAZY!!
Take care all-D