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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slkanowitz | @slkanowitz | Apr 14 2:52pm

I don’t know how old you are, but no one is too young to have lupus or rheumatoid arthritis. I am shocked that a rheumatologist would ignore all your symptoms plus positive tests related to rheumatoid arthritis, possibly lupus or other autoimmune diseases. Infants, toddlers and young children can get these diseases! Please pursue seeing another rheumatologist and don’t chase zebras when you’re surrounded by horses if you know what I mean. RA can cause neck pain because the cervical spine has synovial membranes. That’s the tissue that RA attacks. Your family history and your symptoms all point to a rheumatalogic, autoimmune disorder that needs to be identified and treated so you can feel better and not develop joint destruction. I’m so sorry you got dismissed by this Dr! Don’t let him discourage you from getting proper help and medical care by a competent, compassionate, caring physician. They are out there but sometimes hard to find. Check out reviews online on anyone you consider going to and get recommendations from your PCP and friends and family if any see a rheumatologist. Best to you!

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1 reply
slkanowitz | @slkanowitz | Apr 14 3:11pm

PS Allergies and autoimmune disorders go together so for the GI issues and other allergy symptoms an allergy/immunology specialist is appropriate too. They should both be part of your health care team. They will focus on different but related aspects of your problems and hopefully will communicate with each other to coordinate your treatment plans.

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pb50 | @pb50 | Apr 14 4:32pm

Grrrrr. Find another Rheumy. Immediately.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 14 7:45pm
In reply to @edarling84 "Should I get tested too? Extreme neck and joint pain. Sibling has chronic Bartonella most likely..." + (show)
@edarling84

Should I get tested too? Extreme neck and joint pain.
Sibling has chronic Bartonella most likely from childhood flea exposure, how can I get my doctor to test me?

My sister is 25F and I am a 27F, both in our late twenties. She just got her diagnosis yesterday.

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). My neck xray showed mild joint degeneration. My sister has been going through similar issues but more extreme and was finally diagnosed with Mast Cell Activation Syndrome and Bartonella. I’m concerned I have the same or another infectious disease. I work in entomology and have been bit by ticks and fleas, as well as my sister and I grew up around many animals that had fleas. Importantly, we got sick around the same time.

How would you recommend I pose this to my doctor? He is aware I’be having these symptoms as I’ve seen him 10+ times, the ER twice, a cardiologist, and a rheumatologist now with no diagnosis. I don’t know how to approach this. Thank you!

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@edarling84, I merged your 2 discussions into one so that people can get a fuller picture.

I agree with @parrot53. If your sister lives close by, are you able to see the same doctor?

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Nemaladyel | @edarling84 | Apr 15 3:29pm
In reply to @slkanowitz "I don’t know how old you are, but no one is too young to have lupus..." + (show)
@slkanowitz

I don’t know how old you are, but no one is too young to have lupus or rheumatoid arthritis. I am shocked that a rheumatologist would ignore all your symptoms plus positive tests related to rheumatoid arthritis, possibly lupus or other autoimmune diseases. Infants, toddlers and young children can get these diseases! Please pursue seeing another rheumatologist and don’t chase zebras when you’re surrounded by horses if you know what I mean. RA can cause neck pain because the cervical spine has synovial membranes. That’s the tissue that RA attacks. Your family history and your symptoms all point to a rheumatalogic, autoimmune disorder that needs to be identified and treated so you can feel better and not develop joint destruction. I’m so sorry you got dismissed by this Dr! Don’t let him discourage you from getting proper help and medical care by a competent, compassionate, caring physician. They are out there but sometimes hard to find. Check out reviews online on anyone you consider going to and get recommendations from your PCP and friends and family if any see a rheumatologist. Best to you!

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Thank you so much for your kind words and suggestions. It has felt so invalidating and hard to deal with multiple doctors say I’m okay when I’m barely living l. My husband takes on a lot of our household chores because I spend all the minimal energy I have on work. Thanks for your reply, it is validating and I really appreciate it!

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slkanowitz | @slkanowitz | Apr 15 9:13pm

An infectious disease dr would be appropriate to check out the Lyme possibility since you have had chronic exposure to ticks, fleas, etc. You should ask specifically to be tested for the things you suspect and take all previous lab results with you to avoid duplicating everything. I would take your husband to appointments if possible, into the exam room, to validate your symptoms. Unfortunately there’s a lot of gender bias against young women and problems are not always taken seriously. To help with presenting your life picture, make a list of functional impairments you have, for example, I can only empty one dishwasher rack, then have to lie down. I can only stand for 10 minutes at the sink or stove, or can only carry one grocery bag to kitchen before resting. Be specific and concise to give a clear picture of your exhaustion level. You might also consider cutting back to part time work if possible as none of these problems are going to get figured out or remedied very quickly. If any other Dr tells you you are ok, look them in the eyes and say “I totally but respectfully disagree and will seek help elsewhere.” You deserve answers and help!

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1 reply
Nemaladyel | @edarling84 | Apr 15 9:46pm
In reply to @slkanowitz "An infectious disease dr would be appropriate to check out the Lyme possibility since you have..." + (show)
@slkanowitz

An infectious disease dr would be appropriate to check out the Lyme possibility since you have had chronic exposure to ticks, fleas, etc. You should ask specifically to be tested for the things you suspect and take all previous lab results with you to avoid duplicating everything. I would take your husband to appointments if possible, into the exam room, to validate your symptoms. Unfortunately there’s a lot of gender bias against young women and problems are not always taken seriously. To help with presenting your life picture, make a list of functional impairments you have, for example, I can only empty one dishwasher rack, then have to lie down. I can only stand for 10 minutes at the sink or stove, or can only carry one grocery bag to kitchen before resting. Be specific and concise to give a clear picture of your exhaustion level. You might also consider cutting back to part time work if possible as none of these problems are going to get figured out or remedied very quickly. If any other Dr tells you you are ok, look them in the eyes and say “I totally but respectfully disagree and will seek help elsewhere.” You deserve answers and help!

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Thank you so much for your great advice! I will try that. I really appreciate it.

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Nemaladyel | @edarling84 | Apr 16 5:09am

Update: I went back to my PCP and he wouldn’t send me to any other specialist. I am feeling so defeated. I have HMO so I can’t just book it myself. He also won’t rule out anything else by giving me an MRI or testing me for Lyme or Bartonella. I don’t know what to do and feel so depressed.

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2 replies
dlydailyhope | @dlydailyhope | Apr 16 8:44am
In reply to @edarling84 "Update: I went back to my PCP and he wouldn’t send me to any other specialist...." + (show)
@edarling84

Update: I went back to my PCP and he wouldn’t send me to any other specialist. I am feeling so defeated. I have HMO so I can’t just book it myself. He also won’t rule out anything else by giving me an MRI or testing me for Lyme or Bartonella. I don’t know what to do and feel so depressed.

Jump to this post

@edarling84
You may need to go to the emergency room on one of your really bad days to have them listen to your symptoms and get testing. Are you able to go to the ER with a HMO copay? I had many problems and couldn’t get my primary doctor to help me get to the bottom of my symptoms. When I almost collapsed with extreme fatigue, I took myself to the ER and was diagnosed with iron deficiency (they did a full iron panel whereas my doctor only did standard testing).

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 16 7:03pm
In reply to @edarling84 "Update: I went back to my PCP and he wouldn’t send me to any other specialist...." + (show)
@edarling84

Update: I went back to my PCP and he wouldn’t send me to any other specialist. I am feeling so defeated. I have HMO so I can’t just book it myself. He also won’t rule out anything else by giving me an MRI or testing me for Lyme or Bartonella. I don’t know what to do and feel so depressed.

Jump to this post

@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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