[regiscindy]

I have not been feeling well for a few years.
My muscles are achy and I am tired most of the time.
I have not found any answers from my gp.
My symptoms are:

-extreme headaches

-achy muscles

-sores in my nose (that keep coming back after using antibiotic ointment)

-dizziness

-brain fog (sometimes I just can not think)

-Photosensitivity (I get hives (or rash) when I am in the sun. I do not burn I get hives. I got a rash on my arm a few years ago from sitting in the car for two hours.)

-My face is always red on my cheeks. (I think it looks like the malar rash.)

-I have had a low grade fever off and on for the last year and a half

-swollen lymph nodes all over (they did a biopsy and told me they were reactive, and may never go down, but I have noticed more popping up)

-lumps in my leg (I had one in each leg since I was a teenager, but I noticed several (at least 20) this summer.) I also have two lumps on each side of my back. they are in almost the same spot on each side, and they are the same shape. The lumps are just below my last rib.

-itchy skin

-allergy to sulfa antibiotics (reaction was a rash from head to toe)


I have not been back to the doctor since my lymph node biopsy came back normal. They said I do not have any infections.

I am trying to get in better shape to see if that will help. So far, no luck.

My bloodwork is normal.
I had CBC with diff, Sed Rate, thyroid (TSH).

I may just need to put up with the way I feel, but I just wanted to know if lupus shows up in a lymph node biopsy? and Can you have Lupus with a normal Sed Rate?

I don't know if these are lupus symptoms. I just wanted an opinion on where to go next if anywhere.

Thank you,
Cindy in Pa

 

[wifajax]

Hi Cindy!

I'm sorry to hear that you have been unwell. It can certainly be frustrating to know there is something wrong, but the doctors can't figure it out.

You do have some symptoms that could fit with an autoimmune disease. Have you been tested for antinuclear antibodies (ANA)? It is considered a screening test for autoimmune diseases, and is often the first lab test done when one is suspected. It is just an indicator that something could be wrong. It isn't specific for any one disease, so the doctors would need to do some further tests if it came back positive.

Take a look at the symptoms list and diagnostic criteria on The Lupus Site link at the top left of this page.

I suggest you go back to the doctor to discuss your continuing symptoms and ask for additional investigation.

Terri

 

[Maia]

To answer your specific questions: lupus does not show up in lymph node biopsies and you do not need an elevated sed rate to have lupus. An ANA test should be run to start investigating autoimmune disease since it seems like something that should be considered given your symptoms and the length of time you've suffered from them. Your GP should be able to run this test, but I would ask to be referred to a rheumatologist regardless of the outcome of that blood test. Other ways to investigate lupus would be with a skin biopsy since you get rashes from the sun - a dermatologist should be able to do that. Some people are auto-antibody/bloodtest negative but still get diagnosed with lupus through a skin biopsy.

Since you live in PA, you may want to get tested for tick borne illnesses such as Lyme. Many of the same symptoms are found with those illnesses too; ideally go to an expert on that matter as most regular GP's won't run the best tests for diagnosis.

Good luck - I hope you get some relief soon and an accurate diagnosis too.

 

[Taree]

Hi. Just wanted to say hello, hope you get answres soon!

 

[helloos]

Hi there and welcome to the site.

The others gave great advice and I just wanted to say "do not give up". You should not just have to learn to live the way you feel, but should be able to find out why you feel that way and get someone to help relieve some of the symptoms.

Can you get a referral to a rhemotologist?

 

[Lyn57]

Hi Cindy

Welcome! I agree you should not have to learn to live with it, you need some help to gain a diagnosis.

I agree with what the others say, so good luck with the doctors and take good care of yourself.

Sending you a gentle hug. :hugbetter:

Lyn