Monday, July 07, 2014

"I HEARD YOU HAVE LUPUS!"

It can and often does take several years to diagnose Lupus. I'm not in any hurry to be in poor enough health for that day to come. Dr. House says, IT'S NEVER LUPUS. It's not Lupus, right? Everyone knows that House MD is the most accurate medical show on television.

According to Mayo Clinic, common symptoms of Lupus include:
  • Fatigue and fever
  • Joint pain, stiffness and swelling
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
  • Skin lesions that appear or worsen with sun exposure
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches, confusion, memory loss

 So do you just have bad allergies, or what?

All my life I thought I had allergies. I had itchy, gritty eyes, I'd get hives and other rashes, a sniffly nose, respiratory illness every summer. My gums were often irritated and ulcer-ridden. Sometimes they'd peel, and I switched my toothpaste many times in frustration. I'd been to the doctor complaining about allergies plenty of times, and they would tell me to take Benadryl, Zyrtec, Claritin (which didn't work) and prescribed Flonase nasal spray (which didn't work) and various inhalers.

Then one day, last year, I finally saw an allergist. He diagnosed my sinus infection and was sure I had seasonal allergies and food allergies. I had tests done on both arms and no reaction. I had blood tests. All negative...

Except one. The Anti-Nuclear Antibody test, or ANA. Now, according to the American College of Rheumatology, 3-15% of healthy individuals will have a positive ANA, so that alone isn't cause for too much alarm. My ANA titer was 1:320. The percentage of healthy adults with that level is more like 3.3%, so there's a little more cause for alarm.

I was to see a rheumatologist, and the wait was long–about four months.

My body reacts severely to mosquito bites.

In the mean-time I read everything I possibly could and and then burned out. I started to feel like I was going crazy waiting and not knowing what's going on. My eyes were in so much pain every day. My knees, hips, and shoulders were hurting and I used a heating pad on them every day. I had been diagnosed with rosacea years prior and wondered if that was a wrong diagnosis. My dental hygienist nagged me about my dry mouth and I wondered if that was part of it, too. I was at the dermatologist for folliculitis and itchy inflammation of the scalp, and continued to have chronic sinus issues. Was it all connected?

Heating and icing joints, medication on scalp rash and thinning hair...

When I finally saw the rheumatologist, I felt silly, since I wasn't in pain that day, but she was great about it. Listening to my symptoms and looking at my medical history, she definitely felt there was something going on and that even if they couldn't make an official diagnosis they could start treating some of the problems. I started taking Plaquenil in hopes that it would help some of my skin issues at the very least. It took 3-4 months to tell but it appears to be working well.

Plaquenil has a rare but serious side effect that causes loss of vision, so I had to get a baseline eye exam. The ophthalmologist confirmed my dry eyes and told me to use Systane eye drops and ointment, and suggested down the road I consider punctal plugs to conserve moisture.

Dry, irritated eyes

I went off of my antidepressants that were contributing to my dry eyes and mouth, and switched migraine medication.

The dermatologist and rheumatologist suggested that some of my skin sensations were due to peripheral neuropathy. The rheumatologist is going with Sjögren's Syndrome (SHOWgrins) for a diagnosis and she said they are still thinking Lupus or other connective tissue disease, but right now we just have to wait for more evidence.

I also suffer from a disturbance of sense of smell and taste and wondered if that was connected. My primary care doctor ordered a CT scan of my sinuses to see if I had an infection or tumor or anything else. They found a mucus filled cyst in my face but the ENT was unimpressed. He said, "SJÖGRENS is your problem, THAT'S what's causing the smell disturbance. If there's no moisture, you can't smell properly." Because of my migraines, the ENT and my primary care doctor agreed to order an MRI just in case there was something else going on.

What is Sjögren's? 

The Sjögren's Syndrome Foundation defines it as a chronic autoimmune disease in which a person’s white blood cells attack his or her moisture-producing glands.

Symptoms vary from person to person but may include:
  • a dry, gritty or burning sensation in the eyes
  • dry mouth
  • difficulty talking, chewing or swallowing
  • a sore or cracked tongue
  • dry or burning throat
  • dry or peeling lips
  • a change in taste or smell
  • increased dental decay
  • joint pain
  • vaginal and skin dryness
  • digestive problems
  • dry nose
  • fatigue
  Sexy, right?


There is always a bit of a rash on my face. It feels like sunburn but it isn't.

I'm supposed to wear protective hats and clothing, stay out of the sun during most of the day if possible, and always wear sunscreen, even when I'm inside. This is alright since going in the sun makes me feel like I have the flu, and I burn easily, and as far as exposing my body, I've always been rather shy. I'm glad I don't have to feel like a wuss about any of it now. Give me all the coverings!

It's a healthy glow, right?

I look a little sunburned all the time anyway.

I am very vain, and have taken great precautions against having bad skin, such as not drinking alcohol regularly, cutting back on caffeine, not using any soaps or cleansers, drinking LOTS of water, and obviously staying out of the sun. I also wear plenty of makeup, as it has sunscreen in it, creates a barrier that helps, and covers up the bad skin. You might think, "Life without alcohol, sunshine and coffee? That hardly seems worth living!" Do a google search of Lupus rash...

Do I have Lupus? Sometimes I think I don't have anything and it's all nonsense, but that's not reality. Some people with these kinds of diseases tell people "Lupus" because it's the only thing anyone's heard of. I want to be accurate when I talk about this journey so I will just say...just because they're "thinking Lupus" doesn't mean it IS Lupus, but it's something Lupus-ish, and my symptoms are my symptoms.

I have done a LOT of googling looking for other people who are going through this, and that's pretty much why I decided to write about it. 

3 comments:

Luvloodesigns said...

It might be interesting for you to look up mast cell activation there are lots of connections with autoimmune issues.

I my self am just learning about them too.

cheers
Kristy

Anne Kamper said...

Hope you are well and curious for updates as I stumbled across your blog post as I await my first rheumetologist appointment after a positive ANA test they are thinking sjogrens or lupus as well. Curious as to any changes in your diagnosis and how things are going

Luvloodesigns said...

I'm actually going to the Goldberg clinic in Georgia. I've dramatically changed my diet and I'm on the mend.
I'd highly recommend looking at the success stories on their site.

I also recommend the Netflix movie what the health. Good luck to you!