Can I have an AI without blood indicators
Okay so I am 28, Female, of hispanic decent. I have been struggling with health problems since i was a child. Migraines at 14, insomnia at 12, feeling poorly since i can remember, PCOS 17, asthma. Over the past could of years everything has amped up to an unmanagable level. My throat gets swollen so much that its hard to swallow for weeks at a time. I get a sensation of trapped air but nothing helps get rid of it no medicine or otc or homeopathic treatment. I am in alot of physical pain when i go out in the sun I get a rash which my dermatologist said is actually hives. My skin is so painful that sometimes even the breeze can bring me to tears. My joints get so painful that not even 300milligrams 3times a day of gabapentin is working. I rest and still feel exhausted and in pain. I teach highschool math I am always up and moving but recently I can barely make it through the whole day and be a productive adult at home and making it the five days is even harder. I get rebound sickness. Im always catching something cold, flu, etc. Nothing makes sense. My dermatologist ordered COMPREHENSIVE METABOLIC PANEL , HLA-B27 ANTIGEN, CBC (INCLUDES DIFF/PLT), ANA SCREEN, IFA, W/REFL TITER AND PATTERN, RHEUMATOID FACTOR, SJOGREN'S ANTIBODIES (SS-A,SS-B), CYCLIC CITRULLINATED PEPTIDE (CCP) AB (IGG). Everything came back perfect, except my SED RATE BY MODIFIED WESTERGREN is at a < 29 H. This is the only thing flagged. My body is inflammed but there is no reason as to why. Am I still able to have an autoimmune with results like this. I do have an aunt who has fibromialgia and a great aunt who had ruhmatoid arthritis. Im scheduled with a Rhuhmatologist in november but is it even worth it am I just going crazy.
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Auguadarrama, negative ANA doesn't rule out autoimmune. It's is good that you are seeing a rheumatologist, though I must say cheers to the dermatologist; that was a thorough order of panels. False negatives are common in some tests. The rheumatologist will sort it.
You should be crazy with all of these symptoms.
I think you'll have some luck.
Have your tried allergies. With asthma and some of your other conditions your body is producing lots of histamine. You may be allergic to gluten or peanuts anything. Maybe pets. It does not sound like RA or Fibro or PMR. In those cases prednisone helps but dont get started on prednisone or you start a bunch of new health issues. Glad your going to a rheumatologist. From there maybe an endocrinologist.
While you are waiting on doctors, you might check with a nutritionist with background in autoimmune disorders; the elimination diet is difficult but can indicate food intolerances that can impact symptoms. Sixteen years ago I caught H1N1 followed by high stress, which kicked off swollen joints and fatigue, which added to my decades of GI problems (bloat), swollen lymph nodes, skin rashes (always diagnosed as dry skin, the dermatologists' mantra), and reflux. Celiac panel bloodwork was negative as was the endoscopy 7 mo later. The rheumatologist didn't test but I had reactive arthritis 20 years ago for a year, so would need HLA-B27 drugs. I went home and searched on anything that could help the symptoms and options included an exclusion diet to check for sensitivities, and going gluten free (GF). So I went GF and my decades of symptoms disappeared in 6 months, including the arthritis. Even with negative tests, I have celiac; I now have collagenous colitis so the doctors accept that I have celiac (HLA DQ8 0302 genetic positive helps, but 4-5% of the population has this gene and it and/or HLA DQ2 has to be triggered for celiac). Consider keeping a food journal that includes symptoms and any stressors that you are facing, along with family history. Effects of stress on us are very under- diagnosed and researched.
I’m sorry to hear that.
I highly suggest to carefully monitor what you eat. To get started I’d absolutely eliminate any gluten and any nightshade vegetables!!!
I suffered from having fissures (small cuts) around my annus and outside of my vaginal area. I suffered for about 7 years. It got worse about a year ago. My doctors took tests - no celiac disease, no allergies. Dermatologists wanted to give me cortisone cream, I tried that once, didn’t help.
A year ago a friend of mine suggested to eliminate gluten … that helped instantly!!!
Then I’ve got cuts again - I had eaten tomatoes. I looked up tomatoes and find out everything about nightshade vegetables. I also learned that the poison/ natural pesticide (Solanin, Tomatin) that’s in nightshades is also in: apples, blueberries, strawberries, cherries. I’m very strict with food. As long as I eliminate gluten and solanin, I don’t have these cuts.
I highly suggest to NOT eat any of those for at least 1-2 month and see if it helps.
Good luck and let us know if it helps.
@tuckerp thank you for your insight. yes my dermatologist caught on to that and im on 40mg of zyrtec 180mg of allegra 10mg of montelukast and 50mg of hydroxyzine daily to help supress my histamine production. Still nothing is helping on that front. Ive been tested for allergies and nothing ever reacted. I have asthma due to getting bronchitis 6 times back to back as a young child. my lungs never recovered. I have had alot of endo testing done and none show a problem thyroid is perfect hormone panel shows perfect. Im at a loss, and everyday is a battle that im not sure i can keep winning
@subsun65 wow that is insane. I had never even stopped to think about tomatoes. I dont eat them because i dont like the texture but apples, bkueberries, cherries, those are some of my favorite fruits. Ill have to stop eating them to see. Thank you for that its not at all something i would have dreamed of doing. I have stopped gluten because my neurologist had be stop certain foods to see if we could reduce my migraines. Again thank you this was pretty awesome.
@gently thank you for your kind words. Yes my derm is amazing, I honestly wouldnt be able to make it this far without her she has been trouble shooting and she actually refered me to the rhuematologist. I wish she was a Primary dr because i have yet to find one as thorough or attentive as her.
Ask your docs if a trial of Low Dose Naltrexone might drive the inflammation out of your body. I take it for Long COVID which caused everything to inflame...and made all my joints hurt so bad I could hardly sleep. The Naltrexone cuts the inflammation down to a dull roar and it gives me more energy. It also appears to be regulating my immune system as I am now less reactive to foods and have less skin rashes...all gifts from Long COVID.
Bloodwork has to be checked over a period of time when there's a chronic autoimmune illness. When I had a positive ANA my rheumatologist was treating me for lupus. Over the years my symptoms were more clearly Sjogrens and RA. I've been treated to Serousnegative RA and Sjogrens for almost 20 years but I don't have RA factor or Sjogrens antibodies. In the past year I've had many new symptoms with my skin. My doctor said, Maybe we've been treating your RA and it's really Psoriatic Arthritis. I've learned I'm okay with all the "mystery" but I always want to learn what I can so I can cope.
@aguadarrama ask your seem to skin biopsy the rash.