Thursday, May 30, 2013

Come Back When You're Sicker

A few months ago, I was sitting outside in the sun. Upon coming inside my
hands started burning as though I had stuck them in the snow- it was around 60 degrees that day. Soon after I developed a rash on my hand. Then intense pressure in my fingernails which lead to them turning purple and then brown. My hands started aching and feeling weak. They progressively got worse. Now I have days that all I can do is cry bc of he pain and weakness in my hands and arms.

My blood work came back positive for ANA and SS-B but negative for SS-A. I have been waiting to get in with a rheumatologist for almost two months. After a very difficult day last week with my hands and arms, my primary care physician put in a referral to get an EMG and meet with a neurologist in a week.

I am really losing hope and feel like I am losing my mind. 12 yrs ago I was diagnosed with anticardiolipin antibody syndrome but once I got pregnant with my second child I was told it was a misdiagnosis. Does any of this sound familiar or can you point me in the right direction? I just want answer to what is wrong with me.

Hi there-
Thanks for writing in.

I'm so sorry about the long wait for the specialist. I have been there, and it's really frustrating. Sometimes I think they make us wait so our symptoms can get worse, which makes us easier to diagnose. Doctors have said to patients with "mild" symptoms "Come back when you're sicker." If it's bad enough, it'll be so obvious even a caveman can diagnose it.

It sounds like you at least have Raynaud's (the discolored and painful fingernails when exposed to cold),  possibly lupus SLE (the other tests and symptoms do sound autoimmune). Plus you have a history of autoimmune activity. Perhaps the anticardiolipin antibody syndrome was real- not a misdiagnosis- and it went into remission with the pregnancy. 

I'm only guessing. I can't really diagnose anyone over the internet (especially since I'm not a doctor or even a nurse, just a fellow patient, and a holistic health coach).

My real "expertise" is that I have had lupus SLE, Raynaud's, Fibromyalgia, and Sjogrens, for 20 years. So those are the illnesses I am most familiar with. They are all autoimmune, and it's very common for someone with an autoimmune disease to find out they have another autoimmune disease. Or 2. Or 3. They are generally all treated the same way, with immune suppressants, which will get the symptoms under control.

Raynaud's is not a big issue for me, in that I just don't let my hands get cold, then I don't have any symptoms. If they do get cold and they hurt, I run them under warm water for a bit. But I'm not sure my Raynaud's is a severe case. My bigger problem has been the lupus. Everyone is different.

Over the years I've found some natural medicine that has helped me to be drug-free and in remission. But I have used and will use medications if things get out of control.

If things get bad enough for you (hopelessness/ unbearable pain), just go to the ER, or to an Urgent Care facility, and try to get some answers and some relief. I was diagnosed with lupus at an Urgent care center after spending the night in the ER because I was in so much pain. Maybe you can at least get some kind of medication that will stop the pain.

Not knowing what's wrong is a tough place to be.
As is being in pain. So if you need some help or relief before your appointment finally rolls around, go ahead and do that for yourself rather than just suffering while you wait.

I wish you speedy and compassionate care-

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"