Help! Positive ANA with swelling, joint and muscle pain and brain fog

Posted by lisabeans @lisabeans, Aug 28, 2017

I have been going through auto immune pain for 3 years. I was seeing one rheumotologist when I have a positive ana (1:160 homogeneous). I have swelling, joint and muscle pain, brain fog, exhaustion (also have mild apnea), I get redness on my cheeks and nose especially in the sun or flourscent lighting, I also have vertigo, ulcerative colitis (in remission) poly cystic ovaries, reflux,. This rheumotolgsit has not diagnosed me since all my other labs have come back normal but says it is inflammatory since I respond well to prednisone. I decide to get a second opinion. This pa at the rhuemotologist office says I have fibro and not an autoimmune issue. She said since I am not swollen all the time it does not sound like inflammatory. Responding to prednisone is the only question for her. She made me stop taking arava (which helped about 60%. She put me on amatriptyline (75 mg). I don't feel relief and it is going on a couple of months. I started aqua therapy for the past month. I do notice that the therapy seems to be getting harder and harder to do and my exhaustion is so high. I also have been getting a feeling of swelling on my legs from the knee down, (worse on right leg) that makes it hard to walk and it tingles. I get numbness and tingling in both hands and feet. I feel so lost and confused. I foresee a third opinion in my future. I am sick of feeling like a hamster running in circles around the wheel and getting no where.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

soccerchick | @soccerchick | Aug 30, 2017

In reply to @johnbishop "Hello @lisabeans, Sorry to hear you have not found anything that helps you and it seems..." + (show)

Yes true compression socks. Mercury or 15 -30 with a doctor script. Socks help while excercise swelling decreases. Then some days it increases. I'm not sure why. The socks help my feet from cramping. I have lymphodema whatever that means...? The socks go just below knee cap. I don't believe in on my feet a lot. Thanks soccerchick

dawnauletta | @dawnauletta | Aug 31, 2017

Have you considered seeing a functional medicine doctor? If you have one in your area I would set up an appointment. Also, have either of the doctors looked into diet, and your gut health? all that is important to start your healing journey.

oldkarl | @oldkarl | Sep 15, 2017

@lisabeans Hi, Lisa. Now, please don't think I am going to dX your disorder. I would like to, but it would probably be wrong. I have LCPDD (Light Chain Protein Deposit Disease) so I think all autoimmune disease is Protein related, dX by getting a SERUM Free Light Chain test done (not plasma). But you should have one, anyway, just in case. But, you should be aware of the hospital rankings in various specialties. One list is at: http://health.usnews.com/best-hospitals/rankings . With any luck you can find a great one close by. The biggest problem is finding and gaining access to the best labs, with the most experienced personnel and the latest equipment. For instance, the Atom Force Electronic Microscope ranges up to about $100,000 in price, but nothing else will do the job. My guess is that only a dozen or so labs actually have one to sort out mis-folded protein molecules. Our local lab does not, so.......

lisabeans | @lisabeans | Sep 16, 2017

Thanks for all that information. I will look into it.

darnell5 | @darnell5 | Jun 19, 2019

What did this turn out to be? My results are the same

John, Volunteer Mentor | @johnbishop | Jun 19, 2019

In reply to @darnell5 "What did this turn out to be? My results are the same" + (show)

Hello @darnell5, welcome to Connect. Unfortunately the discussion you posted your question in is an old one from 2013. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where you can meet @lisabeans @steeldove and other members who have shared their experience with similar symptoms.

> Groups > Autoimmune Diseases > Help!
-- https://connect.mayoclinic.org/discussion/help-2/

@darnell5 Mayo Clinic has some information about the ANA test and why it's done on their website here:
-- https://www.mayoclinic.org/tests-procedures/ana-test/about/pac-20385204

Have you met with a rheumatologist? Are you able to share a little more about your symptoms?

Ethan McConkey, Moderator | @ethanmcconkey | Jun 19, 2019

Hi @darnell5 you may have noticed I moved your post to this existing discussion involving ANA tests so that you can connect with others who have similar experience. Simply click VIEW & REPLY in your email notification to get to your post.

I wanted to thank @johnbishop for responding to you and wanted to join him in welcoming you to Connect.

Back to you @darnell5 have you set up an appointment with a rheumatologist and as John said are you able to share more about your symptoms?

rpartridge92 | @rpartridge92 | Jul 19, 2022

i am seeing a rheumatologist who believes I HAVE INFLAMMATORY AUTOIMMUNE DISORDER. POSSIBLY CONNECTIVE TISSUE DISORDER. IVE HAD fibromyalgia post op shoulder surgery 2013-2014

I SEE neureulogist who has confirmed my SEVERE, SMALL FIBER 2019-2021 test NEUROPATHY. BY PUNCH BIOPSY TESTING

IRS SO HARD FIGURING THINGS OUT I ALSO HAVE iGe due to indoor outdoor food allergies just fouNed out this-year after chronic sinus infection January TO SUMMER 10 ANTIBIOTICS 5 STEROIDS ALREADY THIS YEAR UGH HUGS

John, Volunteer Mentor | @johnbishop | Jul 19, 2022

In reply to @rpartridge92 "i am seeing a rheumatologist who believes I HAVE INFLAMMATORY AUTOIMMUNE DISORDER. POSSIBLY CONNECTIVE TISSUE DISORDER...." + (show)

Welcome @rpartridge92, You are so right that it is hard to figure things out when you have so much going on. What is your most bothersome symptom?

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