ANA positive then negative then positive...

Posted by comptomama @comptomama, Sep 8 9:14pm

I have spent my whole adult life with strange symptoms. As a child I would get high fevers and I would have bouts of Alice in Wonderland Syndrome. It was feeling like my body parts would get big then small. I also experienced "seeing" shapes get big and small. I was not actually seeing this. My eyes are closed and I would visualize it against my will. It caused quite a bit of anxiety for me. But it went away as I became a teenager. Then I started having skin issues. It looked like eczema. It was so itchy. I got it on my arms and fingers. When I was in my 20s I started having hip pain. Diagnosed with bursitis. This was the first time I had a positive ANA result. I seemed to become allergic to the sun especially when I was pregnant. I would get those itchy eczema like bumps on my chest. I also had a yeast or fungus all over my back and chest only when pregnant. Curiously my sister had the same experience 10 years later during her pregnancies. It was quarter size circles all over that were intensely itchy. I have an itch on the bottom of my big toe that has come and gone for 26 years. The same toe started getting numb in 2010. I started experiencing pain in my shin and a doctor said it could be ms. I brushed it off (no insurance) Then in 2012 , I was having pain in both legs. I elevated them and went to sleep. When I awoke, I had pain, numbness and tingling and trouble coordinating my legs to walk. It was both legs from my feet to my thighs. It has been 10 years and I have experienced pain numbness and tingling everyday since. Anf the AIWS came back. I have seen countless doctors. I have had MRIs of my full spine. My ana goes back and forth from positive to negative. My titer is 1:80 which is low. Doctors have literally said healthy people can have a positive ana. I am not healthy. Makes me angry. I take 600 mgs of gabapentin to help some pain. I do not want pills. I want a diagnosis. Idiopathic neuropathy is my diagnosis which is no diagnosis at all. It is a symptom of something. I do have CKD stage 3. My grandma had lupus and CKD and died from ILD at 77. My uncle had ILD and died at 68. My mom and brother also have CKD. My son and daughter have CKD. My son also has celiac disease. It all sounds hereditary and autoimmune to me. I get sick of doctors who just want my co-pay. Blood work looks good see ya in 6 months… Do my symptoms and family history make sense to anyone? Sorry for the long post.

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

Thought I would mention what I have been tested for:
MS
Lyme
GB
Rheumatoid Arthitis
Celiac (blood test only)
B12 deficiency
Heavy metal poisoning
Hiv
Hepatitis
All tests were normal

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@comptomama I cannot offer any advise but want to express my sympathy and concern for the lack of care you have been given. This should not happen.

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Thank you. It is helpful to have people acknowledge the frustration I feel. I do not know if it is the area I live in that has caused me to experience poor healthcare or what. I am hopeful for answers someday. But I do appreciate your words.

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@comptomama

Thank you. It is helpful to have people acknowledge the frustration I feel. I do not know if it is the area I live in that has caused me to experience poor healthcare or what. I am hopeful for answers someday. But I do appreciate your words.

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@comptomama. It’s not just where you live, it is everywhere.

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It took many years and many doctors to get my diagnosis

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Hello @comptomama, I would like to add my welcome along with @bustrbrwn22 and others. As another member with the idiopathic diagnosis for my small fiber peripheral neuropathy I understand your frustration with the diagnosis and wanting to find something that helps. My only saving grace is that I don't have the pain with my neuropathy, just the ugly numbness and some minor tingling.

If I can offer any suggestions is to keep looking for answers and researching to learn more about your conditions. I don't know much about ANA testing but have found a couple of articles on the topic that may be helpful. The second one is talking about Lupus but it lists some interesting facts about the ANA test itself.
— Patient education: Antinuclear antibodies (ANA) (Beyond the Basics):
https://www.uptodate.com/contents/antinuclear-antibodies-ana-beyond-the-basics/print
— Your ANA: Facts and Fiction: https://kaleidoscopefightinglupus.org/your-ana-facts-and-fiction/

You mentioned you are taking gabapentin to help with the pain. The Foundation for Peripheral Neuropathy has a lot of good information on complementary and alternative treatments that have helped people with neuropathy — https://www.foundationforpn.org/treatments/.

Have you tried or looked into any complementary or alternative treatments?

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@dianecostella

It took many years and many doctors to get my diagnosis

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I feel like that if DNA testing was done more often, people could get diagnosed faster. If the science is there to do it that is. Instead so many of us become sicker and sicker while dealing with doctors who just don't know the answers. If we can get diagnosis out of the way the doctors can start with the right treatments.

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@johnbishop

Hello @comptomama, I would like to add my welcome along with @bustrbrwn22 and others. As another member with the idiopathic diagnosis for my small fiber peripheral neuropathy I understand your frustration with the diagnosis and wanting to find something that helps. My only saving grace is that I don't have the pain with my neuropathy, just the ugly numbness and some minor tingling.

If I can offer any suggestions is to keep looking for answers and researching to learn more about your conditions. I don't know much about ANA testing but have found a couple of articles on the topic that may be helpful. The second one is talking about Lupus but it lists some interesting facts about the ANA test itself.
— Patient education: Antinuclear antibodies (ANA) (Beyond the Basics):
https://www.uptodate.com/contents/antinuclear-antibodies-ana-beyond-the-basics/print
— Your ANA: Facts and Fiction: https://kaleidoscopefightinglupus.org/your-ana-facts-and-fiction/

You mentioned you are taking gabapentin to help with the pain. The Foundation for Peripheral Neuropathy has a lot of good information on complementary and alternative treatments that have helped people with neuropathy — https://www.foundationforpn.org/treatments/.

Have you tried or looked into any complementary or alternative treatments?

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Thank you for the articles. They have good information. I was diagnosed with the idiopathic PN based on my symptoms alone. I had 3 Nerve Conduction studies that did not show problems so I was confused about that and wondered if it might be Small Fiber PN. I asked my doctor for a skin biopsy and she brushed it off by saying she didn't think anyone in the area did them. I said I didn't mind traveling for answers. She sent me to another neurologist who was only concerned about MS. So he did my 3 set of MRIs. I coerced my primary doctor to send me to a rheumatologist. He said let me run your blood work and my ANA came back negative. The recent test I did before I saw him was positive… He didn't even call me back to discuss the results. Just ghosted me. I try not to tell doctor's all my symptoms for fear that they will be put off by me. I have not tried some of the alternatives for my PN to answer your question. A lot of pills make me too sleepy. Over-the-counter stuff does not help. I do used medical cannabis when necessary, usually when trying to sleep and having way too much pan. There are some items in the article that I will look more into. Thank you for your assistance.

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