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Got an appointment!

Dec 03, 2016 8:34 AM

So I had emailed my doctor and the next day I received a phone call from the rheumatology department saying she had referred me to them. It's a big step! I'm positive and hopeful that I'll find some answers quickly! My appointment in next Friday.

I had a very rough day yesterday. My legs to my toes and my biceps to my fingertips were very painful - deep aching, pins & needles, stabbing pain. My right hand was the worst. I noticed last night that my thumb knuckle has a knot on it and my index and middle fingers are quite swollen (50% larger than on my left hand). This was a new finding last night. My mom had left a couple of Norco for me after my last migraine in case I was desperate. I finally took one last my night. 30-40 minutes after taking it I finally had some relief and was able to doze off. Oddly enough, if I placed pressure on my right hand, it dissipated some of the pain. It definitely looked rheumatoid in nature from comparing to patients I've had in the past who had RA, but I tested negative for it not long ago. I didn't have stiffness last night though like I typically do when my fingers hurt. I just woke up and it feels significantly better. As I type I can feel some of the aching creeping back in. Heat feels good (running hot water over my hand) but the benefits disappear one I turn off the water and dry my hand. Also noticed about a week ago that my middle finger on my right hand is beginning to bow to the right above my top knuckle. Hmm. We shall see :)

Dec 03, 2016 8:53 AM

I'm glad you got an appointment. Sorry you're having problems with your hands. (((gentle hugs)))

Dec 03, 2016 9:01 AM

Thank you 💛

Dec 03, 2016 9:01 AM

I hope you get answers. Your blood work can be negative and you can still have RA. It's called sero negative RA. Blood work is not definitive. Have you had an ANA test? Also not definitive but with your other symptoms will help confirm if you have autoimmune disease like RA, Lupus,Sjogrens. Make sure you document every symptom. even if you don't think it's related.
I was ANA positive 3x saw 2 Rheumies and was still told the Ana was a false positive even with tons of obvious symptoms. Eventually I was diagnosed with lupus and I suspect RA will eventually show up in blood work. It's progressive so ask for your blood work to be repeated every few months. Hopefully your Rheumie will see it and take it seriously. Aside from my ANA test all other bloodwork was negative.

Dec 03, 2016 9:11 AM

Gibber- Thank you for the advice! My doctor ordered a whole slew of blood work when I initially went in with hand and foot pain in early July. Because my dad has RA, she ordered the basic test but also an additional test that she said was related but more detailed. I'm not sure if this was the test that the lab at this facility said I'd have to go down to Denver for our not. They only had one facility in Colorado that drew for it. Because of scheduling issues with my job and the high cost of the other lab work, I didn't get the extra test. I an kicking myself for that now. I will clarify all of it with the rheumatologist on Friday and get it drawn if he feels it's important.

Dec 03, 2016 9:19 AM

Ana I don't think is a complicated one. Just don't give up finding answers if you know something is wrong. The Internist that diagnosed me thinks I've had lupus since I was 13 when I was first diagnosed with Epilepsy. He thinks it's lupus related. I lost my bladder at 28 do to IC which he also thinks is lupus related. Now I have lupus arthritis in all my joints. The pain is what sent me on the 2.5 year hunt for help. My doc didn't take me seriously until my fingers turned blue and white in front of him with Raynaud's. I'm 46 now.

Dec 03, 2016 9:59 AM

For years I have tested mildly positive on my ANA test. My doctors say that it's inconclusive for Lupus. My mom has Lupus and I share many of her symptoms.

What treatments can be done for Lupus? Her doctor just sees her every 6 months, says nothing's changed and come back in 6 months.

Frustrating.

Dec 03, 2016 1:28 PM

Oh my goodness you probably have it. Find a doc that knows about autoimmune disease and takes you seriously. Rheumatologist being one. It's progressive and potentially life threatening. The sooner you're treated the better. Its taken my bladder and is showing signs of affecting my kidneys now. It's also caused Epilepsy. You need to be on meds as well as your mother asap to slow down the damage. It's your own immune system attacking you. Immunosuppressants are one of the major treatments. Helps slow your immune system from attacking you. Methotrexate is one of those. It's a chemo drug. Plaquinel is another med they use to treat lupus and autoimmune disease. There's many different ones depending on how it's affecting you. Stay out of the sun it's dangerous for both of you. I would suggest you do some research. This disease is very dangerous and usually where there is one autoimmune disease, there are more over lapping ones like RA, & Sjogrens
And Raynaud's (digits turn white or blue with cold and or stress). It can attack anywhere anytime. Heart, lungs, skin, joints anything. It's very unpredictable. Blood tests are not definitive. You can test negative and actually have it. You only need 4 of 11 markers to be diagnosed. Having said that I had at least 8 markers and for 2.5 years they told me I didn't have it. I even tested positive 3x with my ANA test but the rest of my blood work was negative. Please fight to get answers document everything. Get a urine test as well to check for protein in your urine. That indicates kidney involvement. Kidney involvement doesn't show up in any other way until they're really in trouble.
If you want to chat or need more info let me know. Definitely educate yourself on it as docs are often clueless. It presents differently for everyone but if doesn't fit into their tiny box of positive bloodwork. They tend to blow you off.
It also runs in families so if your mom has it and you've tested ANA positive with other symptoms your likely have it.

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