Hello! I'm new here.

[tiannaleft]

Hi everyone!  I'm new here but sadly not new to health concerns.

(too long, don't read)
I had Hodgkins Lymphoma in 2005 and received 6 months of chemo, no radiation.  A lot of side effects during chemo but only mental health ones post.  My family has A LOT of cancer in it so when my mom was diagnosed with Ovarian we all elected to get genetic testing.  Turns out the family has a genetic disease called Lynch Syndrome, which leaves us with a >50% of developing colon cancer and endometrial cancer.  This past December, I elected to get a hysterectomy, ovaries included. Since the surgery, the minor aches and pains I experienced at night became full blown pain that woke me up on a regular basis - pain in my hips, knees, ankles, elbows, shoulders, and hands.  I'd often wake up and barely be able to move my hands for 30-40 minutes.  Rewind a bit - Prior to my surgery, I had searing elbow pain for several years.  I could never remember just how I'd injured myself.  However, I started Acupuncture last year and it made the pain go away completely.  These past couple of weeks, that pain has returned with a vengeance....I stopped Acupuncture just before my hysterectomy in December.  I've also experience dry, itchy nose and a dry mouth for years - things I just never really thought twice about, dehydration, dry skin, blah blah.  Back to the present - I made an appointment with my primary to discuss the increasing pain that wakes me up.  She orders a host of testing including ANA.  ANA came back positive 1:640 speckled and SSA came back positive as well as a high CRP and ESR.  All other tests were negative: RF, dsDNA, SSB, Jo, RNP, SLC-70.  Additionally, my FT4 dropped by half - still in normal range but a huge drop in 12 months. 

My primary went through all the results with me and downplayed them all.  When I asked for a referral to a Rheumy, she told me that they would basically dismiss me, which I don't understand considering the results.  Thankfully, she gave me the referral anyway.  I have so many questions and can't wait for my appointment - 3 weeks from now, gah!  I wonder if this is a result of the chemo 12 years ago and did the hysterectomy make it worse.  I wonder if it is just Sjogrens and I wonder what I can do about it all!  I'd rather stick to just Acupuncture if I can help it but I guess I'll need to make sure my glands and all else are okay. 

Anyway, thanks for reading and thanks for the tons of info on this site.

PS...I'm 38 years young

[irish]

Well, so much for that doctors opinion. lol....We all have pretty much had some doctors that just don't get it. Heavens knows why you have all this going on, but I would say that you probably are high risk for autoimmune because of your genetic predisoposition to cancer, having the chemo and then the stress of the surgery.

You also had some stuff going on prior to surgery so who knows. I do know that you would probably benefit a whole lot from seeing an immunologist as they deal with the genetic issues plus the immune diseases that can occur when one has autoimmune diseases.

You certainly have enough problems and positive blood work that I highly doubt a doctor would dismiss you and find it hard to believe that these doctors continue to pooh-pooh your concerns. Sometimes  think it is because a lot of patients are more informed these days and it threatens the doctors. It is hard to tell what all is going on with you but from my experience with immunologists I would think that would be a good choice even if you have to travel to see one and get diagnosed.

Many doctors night find your health history quite daunting. I doctored for years with all sorts of issues from age 21 and got diagnosed with Sjogrens at age 60 after being sick for years. Also several years later was referred to immunologist who diagnosed me with 2 more autoimmune diseases and 2 immune deficiencies. I just had another autoimmune disease diagnosed this summer. I am going into my 11 year of IVIG high dose for my myasthenia gravis. I can't tell you how much an immunologist helped me in my battle for health. Good luck and keep us updated. irish

[A Mom on Spin]

Welcome to the group, although I'm sorry that you have had to find your way here.

I, too, highly doubt that any doctor would dismiss you with bloodwork and symptoms like that.  The thing to remember is that you usually have a genetic predisposition towards autoimmune diseases, but then have to encounter an environmental trigger to set them in motion.  Triggers are usually thought to be infections of some kind, but who knows for sure?

I'm sure the rheumatologist will run more tests.  I have have never been to an immunologist, but Irish makes a good point.  Perhaps you can follow up there after you see what the rheum says.

Liz