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ReetaV
New Member


Date Joined Apr 2014
Total Posts : 5
   Posted 5/13/2014 2:07 AM (GMT -6)   
I am a new user, but I am just so incredibly done with trying to get this (or any!) diagnosis. I hope you all have some insight because I'm exhausted and angry and disabled right now.

I just got back from yet another ER visit for odd symptoms and severe pain and this one was just the absolute worst case of de-humanizing degradation and no help at all. If anyone here has any insight on how to handle things if your typical tests are normal (ie: not lupus/rheumatoid/etc aimed testing, just WBC, urinalysis) and no one will test for more, I'd really appreciate the insight.

I've seen a rheumatologist who was with me for all of 15 minutes and didn't do any bloodwork or care to listen to any of my history. I don't know what the extent of my bloodwork has been - only one doc has done any bloodwork with the suspicion of auto-immune source and he literally told me that based on old bloodwork I "couldn't have lupus or anything." So my bloodwork is normal, but it's only normal bloodwork.

I have pretty profound raynaud's. I have had my first malar rash this week. I have odd skin issues including but not limited to: puffy white sores on joint areas that shear off and turn into huge, angry, wet, red, blistery sores, Tiny, almost zit like dots appearing in groups around my body that turn into scaly patches or angry, wet, red sores (explained tonight as a portion of erythema nodosum? I don't know), sensitivity to all kinds of soaps and detergents (angry red rash), raised bumps on my legs that turn into nasty bruising (erythema nodosum, I presume), livedo reticularis (like a textbook picture) all over - hands, forearms, thighs, shins, feet, and oozing sores in and around my nose. The nose issues are accompanied by almost constant red, sore throat and frequently nose. I have photosensitivity, rash wise, but also with general fatigue and malaise. My joint and muscle pain is debilitating. I have chest pain with breath and exertion. I have kidney pain as though someone is sticking a knife in my right and sometimes left side. I can't relax enough to pee most of the time, and sometimes it's cloudy.

I have migraines and all the associated aura symptoms - visual auras with scotomas, sensory auras, dysphasic auras and hemiplegic. My neurologic symptoms are troubling and difficult to address because they come and go like all else but are quite crippling.

Any thoughts?

I'm pretty done with being told I need a psychiatric evaluation.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/13/2014 6:21 PM (GMT -6)   
You can have your primary run the lupus/autoimmune panel then send you to a different rheumy.
Some rheumys will try to stick to the old method of bloodwork only. They must follow the 11 indicators list accepted by the ACR.
Your symptoms sound so bad. Are you protecting yourself from the sun, fluorescent lighting, and halogen lights?
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/14/2014 5:33 AM (GMT -6)   
I agree, try another rheumy. Sometimes it takes a while to find a good one. Also try to see your primary doc after any er visits. They are more likely to put the pieces together.
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

ReetaV
New Member


Date Joined Apr 2014
Total Posts : 5
   Posted 5/14/2014 2:10 PM (GMT -6)   
Thankfully my pcp is awesome, but the degree of my disability is increasing dramatically and I felt like I needed to check if I needed admittance. I've got an appt with her coming up, she's good about getting me in even when she's swamped.

I didn't realize halogen and fluorescent light could be contributing! I'm really glad yoi mentioned it. Thank you. I don't have a lot of exposure to light in general, some sunlight on the days that I actually get out but its very limited. I'll continue to be cautious.

And my pcp is on board with getting a new rheumy and willing to do bloodwork, its just the waiting game that's killing me. I'm getting dramatically worse and the drugs for neuralgia/NSAIDs aren't even touching my pain. I'm taking more and more hydromorphone that I have on hand for emergencies and its really starting to scare me. I definitely don't want to abuse it/create dependency. I'm also at the point where its hard to live without a caretaker. :/

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 5/14/2014 9:51 PM (GMT -6)   
Sorry to hear that you're having so much pain (((hugs))). I know how that goes though, I suffer really bad pain tool I know it's hard to wait and see but that's is just the way they do things to lupus patients. Unfortunately, a lot of lupus patients go through a lot of Rheumy prior to finding the correct Doctor.

You mentioned about an admission, could your primary admit you if you need to be admitted. I know that my primary Dr. Will admit whenever i need it. Of course, if I go thru the ER, I'm certain to be admitted. I go to a military teach hospital so unless my Rheumy or primary is on call or the staff Doctor in charge I won't see them the whole time I'm there. It took my Doctors 13 years to DX me with my lupus. I went thru at least 7 or 8 of them before I found one I liked.

Try not to get to discouraged and hang in there. I'd suggest you keep a support document, keep a journal on your symptoms, take photos of rashes, mouth ulcers, anything that may be helpful. As for you pain medications, if you need to take narcotics now, it's possible that you may stay on them. I've been on pain meds for quite awhile now. I know that most people worry about getting addicted to them, there is a difference between being dependent and being addicted to them.

Hang in there and please ask any ?'s you may have. Let us know how your doing and if you need to come and vent here please do. We all understand what you're going through right now.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

ReetaV
New Member


Date Joined Apr 2014
Total Posts : 5
   Posted 5/15/2014 4:25 AM (GMT -6)   
Wow... I'm just... speechless.

I've been crying a lot more than usual lately. Getting to age 24 with all this pain... for 10 years, I guess I learned to clam up and move on. There aren't a lot.of tears in my world. I just soldier on.

But being here and getting understanding and love from people who don't think I'm making it up or too young to be sick or attention seeking... I'm just speechless.

Thank you.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/15/2014 5:58 AM (GMT -6)   
ReetaV, you will find understanding here and I'm glad you found us :)

The effects of disease and feeling unwell for a prolonged period of time will bring anyone to tears. It's a roller coaster ride of emotions that I wouldn't wish upon anyone. It's hard to persevere but hopefully you will get some answers and relief soon.

Sending a gentle hug your way
:)
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

ReetaV
New Member


Date Joined Apr 2014
Total Posts : 5
   Posted 5/15/2014 10:48 AM (GMT -6)   
Goodness, well I'm glad to be here.

Right now, I feel like whatever is happening is getting dramatically worse quite quickly. Everything hurts and feels heavy like lead. When I took my temp this morning I felt feverish but I read at 96.8... weird. I don't even know what to make of that.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/15/2014 3:30 PM (GMT -6)   
The temperture thing is odd for me too. I will be feeling so feverish and the thermometer will read below normal. My average temp is 96.8. If I get sick it goes lower.
I don't understand that myself.

I hope you stick around here. It's good to meet new folks. ;-)
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/16/2014 7:17 AM (GMT -6)   
My average is the low 96's sometimes lower. Even when my husband touches me and says I feel like I'm on fire. I told my rheumy, her response was, "sounds like your thermometer is broken or crappy, invest in a good one".

I just gave up on the whole thermometer thing.

I feel as though I'm walking through peanut butter myself today ReetaV. Last night in bed my hubby said I was burning up again too. It's not nice when our bodies feel like lead. :( I attribute this to a flare up. Today will be a "do nothing but hobble to the bathroom when needed" day for me.

I love my couch :)
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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