Lupus Message Boards
Register Latest Topics
 
 
 


Reply
  Author   Comment  
moonshadow

Junior Member
Registered:
Posts: 2
 #1 
Never been on this kind of board before, not even sure I belong here but I am beyond frustrated, scared and just plain tired.

I am currently waiting on test results and I'm not sure if I am more scared of getting a dx or getting stuck back  in the same loop of not knowing what is going on and watching it mess up my life.

Not even sure where to start, I am 37. A couple of years I had a bout with mono, that kicked my butt.  I didn't have normal mono symptoms, no sore thoart, etc. Mostly I was dizzy, feverish and generally ill. After a long haul I got feeling better, got a new job started working out daily, got promoted, life was great.

Then I got tired, not just tired but exhausted, unwell dizzy like the mono. My co-workers started commenting I looked like hell. Some days felt like a complete fog, my memory starting acting up, I couldn't concentrate and things got bad. I was diagnosed with extreme anemia, cause was never really found but blamed on my excessively miserable periods. I began taking iron supplements and my hemoglobin eked up and  now it is normal but things are worse. I had to leave my job as I was making mistakes due to this fog, I was  looking at a de- promotion. The company my husband works for closed their doors, so money is tight and I am no closer to feeling better or figuring out an answer.

I have bad joint pain, mostly my elbows, hands and knees and wicked feet cramps.

numbness in my hands.
My hair is steadily falling out, it is now the thickness it normally is when I get it thinned.
I keep getting breast infections.
I have sores on my scalp, in the back.
A scaly dry rash on my ankle for months ( my doc doesn't think it is related, it doesn't itch but it hurts)
I get strange bumps on my lips that go away quickly, too quick for a cold sore and bumps in my nose.
I have started getting migraines or what I think are migraines.
My memory is so bad right now ( I told a cab driver the wrong address the other day) and I am so tired, a tired I can't even explain.

My ferritin and hemoglobin is normal now.
Thyroid tests seems normal.
Kidney blood work looks good, though an er doc told  me every urine test I have ever given has blood in it. (I don't know what is up with that?)
ESR is normal range and so is CRP. Ra factor is below 10 so all good there. Just waiting on the ANA right now.

Can these all be normal and still have something wrong?

I don't want there to be anything wrong but I desperately need to feel better or at least get some answers. I know my doc will dismiss me if this blood work comes up clear and I don't know what to do.

Maybe I am just crazy, any words of wisdom or advice you can give? At the end of my rope here.


 

Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,392
 #2 
Welcome

A rheumatologist should be seen to evaluate a lupus possibility. This is from Johns Hopkins:

No single finding qualifies an individual as having SLE. Instead, the American College of Rheumatology (ACR) has devised certain classification criteria, and four or more of these criteria must be present for a classification of lupus. [The term “classification” is not synonymous with “diagnosis.” “Classification” means that reasonable certainty exists for the diagnosis of lupus for research purposes.] Although, these criteria are currently being updated, they are believed to be about 90% effective. The ACR criteria include malar rash; discoid rash; photosensitivity (development of a rash after sun exposure); oral or nasal ulcers; arthritis of multiple joints; serositis: (inflammation of the lining around the lungs or heart); kidney disease indicated by protein or casts in the urine; neurological disorders such as seizures and psychosis; and blood disorders such as hemolytic anemia, leukopenia, and lymphopenia. Other signs that are common but not included in the classification criteria are hair loss or breaking, especially around the forehead, and Raynaud’s Phenomenon, a two- or three-color change of the fingertips upon cold exposure.

Lupus is extremely difficult to dx. and ANA is just a stepping stone.  A positive ANA test does not necessarily mean that someone has lupus; in fact, one out of five normal women has a positive ANA. However, a negative ANA test greatly reduces the suspicion.

You can find more info here:

https://www.hopkinslupus.org

Hope this helps.



__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
moonshadow

Junior Member
Registered:
Posts: 2
 #3 
Hi Robin, Thanks for the information.All information helps :)

Currently I am seeing an internalist, no rheumatologists in my direct area and getting referrals is like pulling teeth here.  Depending on the ANA results and what happens I am going to push for it even though it is a distant to travel. 

My big worry is being dismissed, as my hemoglobin got better and I kept saying I felt worse the doc kept telling me it was just the anemia and it will get better. It's frustrating.

At the end of the day I hope they find something simple that was overlooked, nothing serious or long term so I can just get on with it and go back to enjoying myself.
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,392
 #4 
"At the end of the day I hope they find something simple that was overlooked, nothing serious or long term so I can just get on with it and go back to enjoying myself."

I certainly hope that for you as well.

__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Moiraine

Avatar / Picture

Junior Member
Registered:
Posts: 24
 #5 
I hope that you find what is wrong with you and it is indeed something simple that can be treated. Good luck.
Previous Topic | Next Topic
Print
Reply

Quick Navigation: