1. < Autoimmune Diseases

Early RA or Infectious disease or something else?

Posted by Nemaladyel @edarling84, Apr 13 9:12pm

I’ve been dealing with chronic joint pain (worst in my neck), enlarged lymph nodes, heart palpitations, fatigue, mood swings, positive ANA, positive RF antibodies (IgA, IgG, IgM), normal CCP, horrible anxiety and panic attacks, GI issues, and extreme food and medicine allergies (hives, rashes, swelling). I recently saw a rheumatologist and he said that because I was young, the neck joint was only had mild degeneration, and my CCP was negative, that all three of my RF antibodies and my ANA was probably a false positive. He diagnosed me with a muscle spasm in my neck and passed me along (even though I’m having systemic joint pain in my fingers, wrists, hips, ankles, and toes - not only my neck). My mom and cousin also have Rheumatoid Arthritis. My sister was just diagnosed with Mast Cell Activation Syndrome and Bartonella.

Should I seek a second opinion? Do you think this is something else? All personal stories appreciated. Thank you!

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parrot53 | @parrot53 | Apr 17 7:53am

Where are you? I was in the NE and was having extreme fatigue and migraines. I couldn’t get a PCP appointment for several weeks so I went to urgent care and they did a Lyme test which came back positive and I was put on antibiotics which resolved the problem. They never used to test for Lyme and associated infections but now it is common in the NE since so many have been exposed and come down with multiple symptoms.

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pb50 | @pb50 | Apr 18 3:51pm
In reply to @becsbuddy "@edarling84 I just hate to hear about the run-around that you’re getting! It is so unfair..." + (show)
@becsbuddy

@edarling84 I just hate to hear about the run-around that you’re getting! It is so unfair and makes for poor medical practice. Have you spoken to someone at your HMO to explain your situation? You might also ask if they would cover you if you went to a university hospital or comprehensive medical center. The doctors there are used to seeing patients with multiple symptoms and/or problems.
Can you think of a good reason why you wouldn’t “create a stink” about this doctor and his non-professional treatment of you? Maybe start with the Practice Manager or lead physician for the practice. It’s a scary thought but, at this point, what have you got to lose? We’re all behind you giving you our support!

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I just don’t have knowledge of how to push back on an HMO. I Never chose one. Can you change PCP under reason of the two of you don’t see your conditions similarly.

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donchampagne1958 | @donchampagne1958 | Apr 21 5:03pm
In reply to @edarling84 "Thanks so much! I will definitely pursue PT and try Tai Chi- thanks for the recommendation!..." + (show)
@edarling84

Thanks so much! I will definitely pursue PT and try Tai Chi- thanks for the recommendation!
I have not been tested for Lyme or Bartonella. I’m hoping my Primary Care Physican will order that test or send me to someone who can.

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I found it shocking that your physician was so dismissive. Yes, do see another primary care provider.

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parrot53 | @parrot53 | Apr 22 6:00am

Hoping you have made some progress in getting a second opinion. Sending you wishes for strength and tenacity in your journey.

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1 reply
Nemaladyel | @edarling84 | Apr 22 11:27pm
In reply to @parrot53 "Hoping you have made some progress in getting a second opinion. Sending you wishes for strength..." + (show)
@parrot53

Hoping you have made some progress in getting a second opinion. Sending you wishes for strength and tenacity in your journey.

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Thank you so much for your kind words. I was in the ER last week because my neck pain got so bad I couldn’t sleep. They found out I had hypokalemia (probably because my diet is so restricted now). They also did a CT and couldn’t find anything but the doctors did help a lot and pointed me to an urgent care where I can get a referral to see a spinal specialist and go around my PCP. I also paid out of pocket to do a blood test for Bartonella and thankfully it came up negative, so now I can relax a tiny bit knowing it’s not the same thing as my sister. I am going to change my PCP at the start of the new month next week so I can be checked for Lyme and then if it’s negative, I’ll go to another rheumatologist. Thanks everyone so much for your support. I really hope my new PCP knows what is going on with me. I’ve lost 30 pounds and I’m really hoping they can find out whatever is going on soon. Keeping my hopes up!

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parrot53 | @parrot53 | Apr 23 6:05am

I am so glad to hear you have found a way to get some answers. Congratulations on the Bartonnela result. Every piece is a step forward. Wishing you strength and courage to continue in your quest for answers.

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hello2 | @hello2 | Apr 23 6:43am

I have a lot of your symptoms. Did he check for Lupus? After 2 two that's what they found. Hang in there. Also see an Infectious Disease Doctor. There are more than one blood test they can do for immflamation.

Good Luck

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adlttl123 | @adlttl123 | Apr 23 8:32am

Yes! Yes! Yes seek a second opinion! I’m sure that you are very frustrated about all of this. Many of us have walked down this very path having trouble getting diagnosed. My best friend has lesions on her brain and has had for five years along with swollen joints all over her hands wrist feet and systemic symptoms. . These are just the highlights of her condition. They have not diagnosed her. I’ve never seen anything like this. Good luck and please stay close and keep us posted.

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