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ANA positive then negative then positive...
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.
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Can you go to a teaching hospital?
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1 Reaction@crystalmn. And @comptomama
I know how you feel. I got tired of doctors telling me to just rest and that I’d be ok. One even told me not to worry because “he wont be the governor forever.” I was finally diagnosed and on an up and down road to recovery.
“My experience of feeling unwell for years before I got a diagnosis turned out to be typical. According to aarda, it takes an average of nearly "ve years (and "ve doctors) for a sufferer to be given a diagnosis. Patients can end up consulting different specialists for different symptoms: a dermatologist, an endocrinologist, an immunologist, a neurologist, a rheumatologist. A lot of people with autoimmune diseases would like to see the establishment of clinical autoimmune centers, where a single doctor would coördinate and oversee a patient’s care, as at a cancer center. (Israel now has one, the "rst of its kind.) Virginia Ladd, the president and executive director of aarda, told me that funding is a problem: donors tend to give to speci"c diseases, and, because few people understand the connection between M.S. and ulcerative colitis and Hashimoto’s, no one gives to “autoimmunity” as a category. (Eighty-"ve per cent of Americans can’t name an autoimmune disease.) As it is, many clinicians assume that the patient, who is often a young woman, is just one of the “worried well.”
You have to be patient. Autoimmunity can be like a spider web—it goes in all directions and pulling it all together for a diagnosis can be elusive.
There are hospitals that are part of the Mayo Clinic network, if you would like to try one.
https://mayoclinic.org/about-mayo-clinic/care-network/members
You can also go to university medical centers or medical centers of excellence in your state.
I hope you will find some answers soon! Be patient! Will you let me know what you learn?
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7 ReactionsI am relatively close to UF Shands in Florida. I may have to go further away from home. Thanks for the advice.
Thank you. I will let you know what I learn if I ever do. My grandmother was called a hypochondriac until they finally figured out that she had lupus. It affected her kidneys her whole life and the doctors were saying he blood pressure was causing the kidney problem. It ended up affecting her lungs. She was diagnosed late in life and ended up dying from her disorder at the age of 77. I wanted to avoid that type of situation. I appreciate your encouragement.
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4 ReactionsMy sister who lives north of Tampa got permission from her health ins to go there. Sh3 was 5here for a week,it was ok and better than her normal care. He4 insurance would not cove4 her to go back
I think Cleveland clinic is in Fl and one other major possibly Mayo.
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1 ReactionMy situation is very much like yours. I have been told by many it sounds like a Connective Tissue disorder... I had a positive ANA last summer and had additional testing done that didn't reveal much. This month I had a neg. ANA????? but a positive HLA-B27.
These are my symptoms;
3 retinal detachments and scarring from surgery
Uveitis
Hypertrophic Scarring
GI issues -Constipation, Barretts Esophagus and Reflux
Moderate to Severe Raynaud's Disease
Fatigue
Muscular aching and soreness
Circular red rashes on legs, arms and torso...come and go.
Seeing a new Rheumatologist next month. Also, Uveitis specialist. I'm sure I forgot some other symptoms...Help!!!!!
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5 ReactionsMy doctor has referred me again to rheumatologist because the last referral did not work. I have read that once you have a positive ANA you do not need dto keep testing it. I mentioned to my doctor that maybe may Titer is too low to consider and she said I had 2 different patterns. I am happy she is taking it seriously. I am also being referred to genetic testing to see if it might be Ehlers Danlos. Fingers crossed for answers. I hope your new rheumatologist figures this out for you!
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4 ReactionsThank you for your prompt response. It's so frustrating and nothing is streamlined! Interesting about the ANA testing. Do you know where you read about not retesting again? Also, my daughter told me that I should get genetic testing. Next on the list!!!
Good luck with yours.
@comptomama, I wish you the best. I can relate with many on this thread.
I have been suffering for 12 years, especially the last 6. I am in my 50s, a single parent of a teenage son with no family support system. My mom had lupus, RA, heart disease, diabetes, Hashimoto's disease, etc. She died at 67 with a heart attack in the ER on Thanksgiving 10 years ago. Her life was very difficult and challenging every day and I recall her always being unhealthy while growing up. Unfortunately, I am struggling with many symptoms like my mom but have difficulty with many generalist/specialist doctors not properly diagnosing me.
I have spent many years and a lot of money (have a high deductible plan) with limited answers or treatment to improve the quality of my life. My son needs me as his sole provider and I am frustrated because I am definitely getting worse. I was just in the ER today (my doctor told me to call 911 due to cardiac like symptoms, chest pressure/difficulty breathing/liver pain, etc.), but after 4+ hours, I was sent home after blood work and IV for fluids (dehydrated, high anion gap blood result showing acidosis). That's it. Told to follow-up with my doctor. I was just at my primary doctor's last Friday due to autoimmune symptoms ( chronic low-grade fevers, weakness/severe fatigue, eyes burn/are dry/feel like I had gravel in them, nausea, pain near liver, vision issues, joint pain, arms/hands/fingers/legs/foot/toes numb, etc.). I wanted updated blood work (came back with positive ANA 1:160 speckled pattern and high CRP showing chronic inflammation), and a referral to a new rheumatologist (the one I went to in the past is retiring but he never was really helpful in diagnosing me). I am also getting surgery next month (July) and wanted to make sure I was okay for surgery. The surgery is an explant due to suspected breast implant illness (have had them for 23 years and both ruptured...scary what you find online...look up BII and the associated cancer BIA-ALCL).
My auto-immune symptoms all started after having my son at the age of 40. The order of diagnoses for the constellation of my many symptoms are: blood work showing positive ANA/RA (2011), spinal stenosis/pain (2011), hearing loss (2017), small fiber neuropathy (2017 punch biopsy confirmed), iron deficiency and thyroid/other auto-antibodies detected (2017), dizzy/fell/broke foot while walking (2018), worsening symptoms 2019 (too many to list), cervical spondylitic myelopathy (spinal cord being injured causing difficulty walking/loss of bladder control which ACDF surgery helped to stop the progression), thyroid nodule (lobectomy ruled out major cancer/removed micro cancer and confirmed Hashimoto's disease), and I am still left feeling terrible. I have left/fired doctors who are not willing to listen, are disrespectful/condescending, and have put in my medical records they thought I was a hypochondriac. Women are not always respected or listened to in health care in my experience so you really need to advocate for yourself and not give up (even though you feel terrible and don't have much energy).
You can prepare for appointments with a list of symptoms/questions but doctors do not have the patience to listen.
Our health care system is broken because patients spend so much time, money, suffering with no positive health outcomes. Patients are left on their own to navigate our overly complicated health care system and doctors get mad when you do your own research online (had a doctor get really annoyed with my questions and what I read are medical journals/articles/research from reputable sites). No one is coordinating our care and we should not have to go to 10 different specialists on our own who are only looking at one small part of your total body. We are full body systems and should be diagnosed/treated as such.
My hope now is in the explant surgery to remove the toxic silicone bags/liners that have been slowly killing me will help. My new rheumatologist is female, younger (mid-late 30s) and may have new training/research and knowledge/skills to help properly diagnose/treat my auto-immune disease(s). The delay in auto-immune disease diagnosis and treatment is killing us. I'm also planning to see a nutritionist to see how I can change my diet to reduce inflammation and autoimmune triggers and detoxify my body. Good luck to everyone struggling with this...you are definitely NOT alone!
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9 Reactions@dlydailyhope You really suffering, aren’t you? It’s been documented that women are not listened to or treated properly by many doctors. It can be a real problem finding the right doctor. I certainly hope your new rheumatologist can help. Be sure to ask, up front, if she has experience with autoimmune diseases. I added the link to Genetic and Rare Diseases website:
https://rarediseases.info.nih.gov/contact/
They can help you find a good doctor in your area.
I, too, worry about your son who also has to deal with your illness and being a teenager. Have you heard of Big Brothers, Big Sisters? My husband and I both got involved with a local group that mentored young teens. The young boy he was matched with is now a college graduate working on his master’s degree.
When are you scheduled for the explant surgery?
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