Possible Autoimmune…undiagnosed

I am going thru the same thing. My ana was positive and titer 1:80 . I know I have lupus. I have all the symptoms and my neurologist will. Ot refer me. He said they were false positive. WHAT? I AM SO FRISTRATED. COVID HAS RUINED MY LIFE. I just got it again 3 weeks ago and it was worse than the other 2. Now I have Pnemonia from the covid. The body aches are horrible. I know I have SDN he says it is that. I told him NO ITS NOT!
My first neurologist retired. Told me I had lesions on my brain from.covid and had me doing infusions every 3 weeks for 9 months to boost my immune system. He thought I had MS. Then he retired and the new neurologist said the opposite. Nothing wrong with me. WTF? IM tired of fighting these doctors. I know my body! My quality of life has gone to shit. I'm 53 and was active. I have 7 grandchildren. I just had one 3 weeks ago and that is where I caught covid in the hospital. I masked up too. Soo. Just hanging out in my pjs all day watching TV with my husband. Good luck to all!

It’s was my daughter’s friend. I’m not sure what she is taking. Her friend lives out of state so they only talk by text. I don’t know the young lady to ask her, I just know that she was misdiagnosed for years. It’s sad that we can’t get answers….i can barely hold my phone up to type this because both my wrists are burning. My left foot has been burning for weeks.

I just joined this group and was amazed at your symptoms and the "diagnosis" because it is not what you think and they are taking the easy way.
When I was 35 I had the "shakes" and would lose feeling in the left side of my face. At 35 I was put on Paxil (without any blood work) - Helped.
I always worked in a high stress environment and at 40 symptoms became worse. I was now told I was in Menopause. So I went with it. At 55 the symptoms had become debilitating ....Headache in the neck that went up into the skull, vision issues, and (again....I have been in menopause for a while) extreme and FAST hair loss.
With Blood work and an MRI hey found both Autoimmune and cerebral microvasculitis. The woman I was working with referred me to a rheumatologist. Long story short (kind of) the main doctor in the group (who is also friends with my husband) overrode this diagnosis-even though it shows in blood work and MRI- and told me it was.........................................................Menopause.
SO.....as a woman, you need to FIGHT for health care. A man has a pill for a crooked penis, but women are thrown into a "crazy" pit. Don't give up, know your body!

@lowrymal150 an ANA of 1:80 is not, in my experience, enough for a diagnosis. But you have symptoms to be listened to. COVID is terrible for some of us. I hope you feel better.

Prayers for you & good luck also🌻 it’s such a pain having drs who won’t listen & do the correct thing….or to even really listen to what the patient is telling them instead of taking just a few symptoms & saying here’s your diagnosis. Don’t give up & keep fighting🌻 wish drs were paid by how well their patients recovered from an illness/health issues.

First, I’m really sorry you’re going through this because I feel like I’m going through something similar and I hate it! I hardly ever feel good, I can’t make plans to do anything because I don’t know if I’ll be able to keep them, I don’t sleep well anymore which just adds to the fatigue. My stomach hurts most of the time and the list goes on, much like yours. I have an excellent GP, who, after many tests and a referral to a rheumatologist (I was able to get a referral based on a minimal result from my blood work that could’ve indicated auto immune. She did nothing but prescribe medication that did not help me) decided that I have anxiety. I have always been a bit of a perfectionist and probably worried more than most about things, but I didn’t think it required medication. I thought it was just me being the person I’ve always been. Then I realized I really am anxious, mostly about feeling bad all the time. I won’t continue my story unless any of this sounds familiar to you. If it does, let me know. If not, I hope you find answers soon. All of these symptoms together are so debilitating. I can truly say I know how you feel.

Boy, wouldn’t that be a dream?! Doctors paid based on their results, like everybody else who works… Great idea!! I’ve gone through so much crap with doctors, especially specialists. I don’t know if anyone else has this issue where you live, but specialists here in Las Vegas don’t answer their phones. You have to leave messages and wait for calls back. Good luck with that! I can’t tell you the number of times I’ve hit the number prompting for ‘doctor’ instead of ‘patient’ or ‘appointment’ just to make sure I get someone. It’s so frustrating. I am so thankful I have a good GP. When everything goes south, he does my calling for me. It’s still impossible to find doctors that care for the most part. So sad.

I’m also sorry that you’re going through this too🌻 I’m the same…I don’t make plans anymore & I was always making plans before I became sick, always on the go, hiking, swimming, last minute adventures…you name it I was always doing something. My sleep also has become horrible. I used to sleep with no issues & wake up about 5:30am & stay awake til like 11pm. Now I’m lucky if I can stay awake for more than 3 hours & the extreme fatigue sets in. When I have a decent day I use the energy I have which is maybe an hr or so to clean or do something productive. I also get anxious sometimes too which I’ve never had before & it’s usually on the days when I start to overthink everything like what did I do wrong, should I have gone to a dr sooner & just blaming myself for getting sick. But I’ve realized this isn’t my fault & it’s out of my control at the moment until I get a diagnosis. Just remember to breathe & take it one day at a time…we will figure this out & reach out to me at anytime you need🌻🌻 prayers to you🌻

It’s the same here & waiting for months to see a specialist or having a primary dr tell you no specialist will see you because it’s depression/anxiety & your labs are normal. It’s very hard to find good drs anymore.

I can say that many things became easier for me when I gave in to taking alprazolam. Now, I have to give in to taking a stronger dose or changing to another anti-anxiety medication. For some reason, this is another conflict for me. I feel like I will be judged for needing this type of medication. I also have to take something to help me sleep, or I will have palpitations into the wee hours worrying about I have no idea what?? I really do feel like quite a mess sometimes, but I am determined to overcome whatever it is I have, even if it’s self-inflicted. I’m really starting to think it is. I hope you see improvement soon, Melissa. It’s a rough way to live. I will add you to my prayer list😉🙏🏻🙏🏻

PS… I have a daughter who has suffered auto immune problems since the birth of her son six years ago. It started with a lupus diagnosis, then moved to a mixed connective tissue disorder diagnosis and is now diagnosed as scleroderma. I am really familiar with a lot of aspects of autoimmune disorders. I have bloodwork this Thursday and I’m being checked again myself. We’ll see… It’s a real stinker sickness. I hope neither of us have it!😢