1. < Autoimmune Diseases

ANA positive result/rare patterns

Posted by idagirl @idagirl, Jul 11 11:00pm

I have had a medical mystery, it feels, for about 7 years. I am diagnosed with hypothyroidism and hypogammaglobulinemia (immunologist said possibly combined immune deficiency- but not yet officially diagnosed- and not so bad I'd need to do the immunoglobulin infusions.)

7 years ago a rheumatologist said it was likely I would be diagnosed with a connective tissue disease disease based on autoimmune panel test, which didn't surprise me because my mom has very advanced RA at 85 years old. From everything I know about what my mom goes through daily, I can say I definitely have the symptoms of early RA, possibly Lupus. At that time when I was tested the titers weren’t very high (1:80 and speckled pattern).

In 2022 I saw a rheumatologist again who ran tests and said my anti-CCP antibodies were flagged high (positive, not super high, but he said it was a sign of something). The rheumatoid factor result was negative. The dr said this is common if I am in the early stages of developing RA and started me on hydroxychloroquine, which I was on for about a year. There was no official diagnosis and I was still in pain and fatigued and getting sick for the next year. After retesting me for the anti-ccp antibodies, the doctor said the level went down and he doesn't believe I have an autoimmune disease. I stopped the hydroxychlorequin because it didn't seem to help.

Now almost a year later, I’m in worse pain, worsening fatigue, low IgG, and just feeling miserable all the time. My pain, stiffness, fatigue and overall health seems to have gotten worse. I noticed it really getting worse when I started working part time cleaning a few vacation condos I manage. It's not that I just get tired or fatigued, I literally feel as if I ran a marathon after just going to the store.

I went back to the rheumatologist a month ago and asked if I should go back on the hydroxychloroquine. He said all my labs were normal and so I didn't need it, then asked what I wanted him to do. I asked him to please recheck the anti-ccp antibody to see if the level went back up since stopping the hydroxychlorequin (which by now was almost a year ago). I thought that would maybe be why everything feels so much worse. He ordered an autoimmune panel again and a couple weeks ago my results came back with a few flags. My CRP was Flagged high and my IgG flagged low. My ESR was normal and pretty much everything else normal.

My ANA results showed two antibodies were flagged with the following patterns:

#1. Mitotic Spindle pattern 1:80 - notes through the lab said the pattern is rare, but most often seen in RA and Lupus, but that it does not specifically point to anything specific as far as helping with any certain diagnosis and one should consider clinical signs and symptoms as well.

#2. Mitotic intercellular bridge (AC 27) 1:80. In the lab notes it says: the residual part of dividing daughter cells just before separation and has been associated with systemic Sclerosis and malignancies.

Of course I looked up systemic sclerosis and have many, many of the signs symptoms (the pain, skin issues, lumps similar to collagen or calcium under various parts of my skin. I have also had two different radiologists in the past mention I had calcifications on my ribs and intercoastal area. I have brought this up more than once with my PCP and rheumatologist and they aren't concerned.

I called the rheumatologist office and the office lady read the results saying nothing was clinically significant other than my CRP was high and one of the ANA's was flagged but not clinically significant and I can take pregabalin, which I was already taking for restless legs.

Here's my problem, I feel crazy and don't trust what my body could be or may not be telling me. I believe I have a high pain tolerance and so it can take years for me to even mention certain systmoms to drs. I can’t work more than a few half days in a row cleaning properties without getting a cold/flu symptoms for days, or without my fingers going numb, wrists hurting, hip pain, coughing... migraine..it literally takes me two days to three days to feel normal again, then a week or two later I'm sick again.

I don't want to continue chasing down a diagnosis, but I guess I'd like to know what other's suggestions are for what they would do next... lay low and wait...ignore it...or seek answers elsewhere. I really don't want to deal with it, but I am thinking of contacting the mayo clinic if I continue feeling horrible. I do need to check in with the immunologist and will.

Thanks for reading through all this!

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melissawolfe1981 | @melissawolfe1981 | Jul 12 8:40am

You’re not crazy even though it feels like you’re losing your mind at times. Going through some of what you’ve been going through for almost 2 years now, I thought too that I was losing my mind. You have to keep pushing for answers & also look for new drs. It’s a pain in the a** to keep fighting for answers, tests & drs who actually listen, but you have to keep pushing. Also keep a journal of all of your symptoms you are experiencing, dates, things you did that day, what your body feels like…having so many symptoms it’s easy to forget some or what you did & how your body felt after. I too suffer with work…doing basic things like vacuuming & dusting causes me to be in bed for a day or 2 with pains & absolutely no energy. Just keep pushing for answers & try to find a new dr. Prayers to you🌻

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1 reply
windyshores | @windyshores | Jul 12 7:35pm

@idagirl one thing, only related to a few of the symptoms: what are you using to clean with? I become very ill with most cleaning products, not to mention dust etc.

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idagirl | @idagirl | Jul 12 10:08pm

We use the “better” organic products, but there’s no doubt I also have allergies and so between working hard and then all the possible allergens, it definitely contributes!

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idagirl | @idagirl | Jul 12 10:10pm
In reply to @melissawolfe1981 "You’re not crazy even though it feels like you’re losing your mind at times. Going through..." + (show)
@melissawolfe1981

You’re not crazy even though it feels like you’re losing your mind at times. Going through some of what you’ve been going through for almost 2 years now, I thought too that I was losing my mind. You have to keep pushing for answers & also look for new drs. It’s a pain in the a** to keep fighting for answers, tests & drs who actually listen, but you have to keep pushing. Also keep a journal of all of your symptoms you are experiencing, dates, things you did that day, what your body feels like…having so many symptoms it’s easy to forget some or what you did & how your body felt after. I too suffer with work…doing basic things like vacuuming & dusting causes me to be in bed for a day or 2 with pains & absolutely no energy. Just keep pushing for answers & try to find a new dr. Prayers to you🌻

Jump to this post

Thank you for the advice and well-wishes. Anyone who has struggled with the unknown in the medical world. Like yourself, seems to understand perfectly.

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twinmom26 | @twinmom26 | Jul 13 8:11am

I can totally relate to your story, as I am going through a very similar situation. I am a retired RN and just now trying to put all of the pieces together. I have a positive ANA and my rheumatologist was treating me as though I had an autoimmune disorder. I was negative for Lupus, Sjogren’s, RA. I am hypermobile and my neck, spine, and shoulders were starting to get worse. I was diagnosed with osteoporosis at a young age and now I’m starting to have heart issues.
I started doing my own research. My cardiologist and I agree I have hEhler’s-Danlos Syndrome (a genetic disorder). My PCP and rheumatologist finally are starting to realize that this is my problem and I’m scheduled for an appointment with a geneticist in January to test for the subtypes (my 3 children all have issues, as well).
I was an RN for 39 years and now I can’t even cook a meal without feeling exhausted.
Ehlers-Danlos Syndrome is a “rare”, “not-so-rare” condition. Many healthcare professionals are uneducated on this disorder and we are often dismissed as patients. I have had red-flags since birth and I’m only now learning more about this condition.
I feel your pain and frustration. You really need to educate yourself and advocate for yourself. After all of these years, mine are finally listening to me! Don’t give up! Good luck and I pray you find out what is going on with you.

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2 replies
idagirl | @idagirl | Jul 13 9:29am

Oh wow, I have heard of that syndrome, sounds horribly exhausting. Prayers for you as well!

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leannestork | @leannestork | Jul 13 5:35pm
In reply to @twinmom26 "I can totally relate to your story, as I am going through a very similar situation...." + (show)
@twinmom26

I can totally relate to your story, as I am going through a very similar situation. I am a retired RN and just now trying to put all of the pieces together. I have a positive ANA and my rheumatologist was treating me as though I had an autoimmune disorder. I was negative for Lupus, Sjogren’s, RA. I am hypermobile and my neck, spine, and shoulders were starting to get worse. I was diagnosed with osteoporosis at a young age and now I’m starting to have heart issues.
I started doing my own research. My cardiologist and I agree I have hEhler’s-Danlos Syndrome (a genetic disorder). My PCP and rheumatologist finally are starting to realize that this is my problem and I’m scheduled for an appointment with a geneticist in January to test for the subtypes (my 3 children all have issues, as well).
I was an RN for 39 years and now I can’t even cook a meal without feeling exhausted.
Ehlers-Danlos Syndrome is a “rare”, “not-so-rare” condition. Many healthcare professionals are uneducated on this disorder and we are often dismissed as patients. I have had red-flags since birth and I’m only now learning more about this condition.
I feel your pain and frustration. You really need to educate yourself and advocate for yourself. After all of these years, mine are finally listening to me! Don’t give up! Good luck and I pray you find out what is going on with you.

Jump to this post

Thankyou for this info...... i might take this to my gp here in Australia... I have all of the same things going on.. My GP is wonderful and over many years has said we can keep spending money on chasing a Title but even then all we will do in the end is treat the symptoms. So sorry you are going through this but makes me feel better I am not the only person with so many symptoms and ANA positive with
HLA-b27 which i was told was the Gene test .. my grandma died of complications of Lupus and a infection.

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leannestork | @leannestork | Jul 13 5:44pm

Hi there ..... I am so sorry for what you are going through and other's in the messages here above. I am in Australia and for many years especially after i had Shingles very badly. I will copy and paste what i had replied above but totally agree it not just tiredness... it is complete exhaustion. I have Lupus which strikes me on the inside ... my grandma had the skin version. I also have Fibromyalgia... find a doctor that specialises in this. I have come to the conclusion that i just can't work like i used to. We moved our business home and find the days i have to go do work that is very busy at the hospital for extra income when our business is quiet i pay for it for a good few days.
Each time the grandkids come over i get a sore throat, I was on Methotrextate and mycophelalate for 3 years.... they wanted to increase it but told them i am coming off it because I had no quality of life. So now i have more complications with my heart and joints with inflamation, and it eating away at my insides but I will just need to keep going back for surgery when needed.... here is a copy of what i had mentioned to the lovely lady above but honestly...... SELF CARE is all you can do and be honest with yourself. Endep helps me sleep ..... i am off for heart surgery in about a week and had to have my hip replaced last year. The list of things wrong is endless and honestly it could be that we are just aging... but the doctor has reminded me that my problems are so much for advanced for someone that has been going through this from age 43 to 53. TAKE CARE EVERYONE...
Thankyou for this info...... i might take this to my gp here in Australia... I have all of the same things going on.. My GP is wonderful and over many years has said we can keep spending money on chasing a Title but even then all we will do in the end is treat the symptoms. So sorry you are going through this but makes me feel better I am not the only person with so many symptoms and ANA positive with HLA-b27 which i was told was the Gene test .. my grandma died of complications of Lupus and an infection.

REPLY
elisabeth007 | @elisabeth007 | Jul 14 6:43pm

you are not crazy. There is an unwelcome club of people with multiple rare difficult to diagnose conditions. And then there is an unwelcome club of those of us who when diagnosed have highly adverse reactions to the medications available. i’m an unproductive member of both. I have however had excellent drs who have helped me accept to a degree the frustration of the situation. i’ve decided no more surgeries where complications are likely to be worse than benefits and no more medications that create worse adverse effects than the untreated condition

REPLY
sommerreign | @sommerreign | Jul 14 9:43pm
In reply to @twinmom26 "I can totally relate to your story, as I am going through a very similar situation...." + (show)
@twinmom26

I can totally relate to your story, as I am going through a very similar situation. I am a retired RN and just now trying to put all of the pieces together. I have a positive ANA and my rheumatologist was treating me as though I had an autoimmune disorder. I was negative for Lupus, Sjogren’s, RA. I am hypermobile and my neck, spine, and shoulders were starting to get worse. I was diagnosed with osteoporosis at a young age and now I’m starting to have heart issues.
I started doing my own research. My cardiologist and I agree I have hEhler’s-Danlos Syndrome (a genetic disorder). My PCP and rheumatologist finally are starting to realize that this is my problem and I’m scheduled for an appointment with a geneticist in January to test for the subtypes (my 3 children all have issues, as well).
I was an RN for 39 years and now I can’t even cook a meal without feeling exhausted.
Ehlers-Danlos Syndrome is a “rare”, “not-so-rare” condition. Many healthcare professionals are uneducated on this disorder and we are often dismissed as patients. I have had red-flags since birth and I’m only now learning more about this condition.
I feel your pain and frustration. You really need to educate yourself and advocate for yourself. After all of these years, mine are finally listening to me! Don’t give up! Good luck and I pray you find out what is going on with you.

Jump to this post

My first cousin had to have heart surgery b/c of EDanlos - I had “growing pains” as a kid after a physically busy day but no body else had growing pains. I’ve had the gastro issues, spine issues, heart issues and I can still be hyper flexible. However I’ve read there is no cure?
So what’s the point of getting more tears? And are you seeing someone at Mayo in Jacksonville or Rochester? At least please keep us informed as to what the new recommended treatment is b/c my daughter also has it & was diagnosed years before !
Thank you

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