If you suspect Lupus or MCTD, be sure

Posted by mattymatilda @mattymatilda, Jul 2 4:30pm

And see an ear nose and throat doctor. My ENT is the one that discovered my lupus. I was having trouble breathing while laying down. It felt like my nasal cavities were blocked. After doing an MRI and having an examination, the ENT said I need to see a rheumatologist. The Lupus had already attacked my nasal cavity eustachian tubes and my hearing. I had no idea I had hearing loss and both of my ears. I’m the only one so far in my family that has hearing loss and I have to wear hearing aids. So if you’re having any ear nasal issues, please go see an ENT they may be able to spot some thing that your PCP missed. My ENT also didn’t MRI on my head. I just wanted to share that with anyone who thinks or feels like they may have, lupus or similar

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lowrymal50 | @lowrymal50 | Jul 6 1:59pm

In reply to @hisdreamweaver "Primary care will refer you. Be well. Best of luck keep fighting" + (show)

Thank you! This new version of Covid was worse then the last 2 I got . I have never been so sick. I have long covid from the first 2 times and now i have COVID again. I went to the hospital bc my daughter was having a baby and the baby actually went to the NICU. We stayed in a nice hotel and I started feeling bad. I just had a scratchy throat so I decided to test myself. I was not expecting it to be positive. We had to leave the next day. I am on day 11 and I still feel awful. Now my husband has it. He never caught it from me the last 2 times. So just GYI, sanitize ur hands and wear a mask. I did all of that and still got it. The coughing is the worst! Bodyaches, soar throat, omg it's horrible. I really think I have lupus after all the testing. The first dr told me I had an brain as a 80year old bc i have numerous lesions on my brain?? It looked like MS. WTH? So for a year I was getting infusions every 3 weeks! My neurologist retired and I went to his colleague. He said the exact opposite He said my brain is fine and it Small fiber neuropathy. Jezzzz. I told him I had covid and I am seeing like floaters in eyes. He said go to urgent care and get a head scan? No empathy. Noone believes me when I tell them.what I am feeling. It's NOT SFN!! He said well I don't treat long covid. So...I don't know what to do anymore

Becky, Volunteer Mentor | @becsbuddy | Jul 6 5:08pm

In reply to @lowrymal50 "Thank you! This new version of Covid was worse then the last 2 I got ...." + (show)

@lowrymal50 I am so sorry about the covid! At least you were at a hotel and not at your daughter’s! And you have reminded me to put a mask in the car and in my purse!
You might check out your community to see if there is a covid clinic. then you can ask, do they have a long-covid clinic. Or you can google ‘long covid clinics’ in your town.
What is your isolation plan if either you or your husband gets covid again?

lowrymal50 | @lowrymal50 | Jul 6 5:39pm

We haven't left the house since. We r just waiting u til all of our symtoms are gone. We tested negative today but still have symptoms. I just do t want to give it to anyone so thank God for instacart! Lol

Langold | @rarelybees2889 | Jul 7 9:04am

Autoimmune is complex
I have several and its frustrating sometimes as there is a huge lack of research (only 3%) for it
Thats why support groups are good.

Langold | @rarelybees2889 | Jul 7 9:06am

In reply to @lowrymal50 "Thank you! This new version of Covid was worse then the last 2 I got ...." + (show)

Go to Mayo if you can

hisdreamweaver | @hisdreamweaver | Jul 7 1:56pm

In reply to @lowrymal50 "Thank you! This new version of Covid was worse then the last 2 I got ...." + (show)

My husband has had Covid 3 times now. Lasts so long. First time he was sick for months no energy at all. I feel bad for you.I ended up with a referral to Mayo Clinic…For autoimmune. Have they looked at Maybe POTS or sjogrens disease? It took almost 10 years for my diagnosis

lowrymal50 | @lowrymal50 | Jul 7 7:05pm

In reply to @hisdreamweaver "My husband has had Covid 3 times now. Lasts so long. First time he was sick..." + (show)

I cannot get anyone that cares to help. The first neurologist said " Noone has written a book on long covid" so he looked at my MRI of my brain and I had alot of lesions on my brain. He said ir was from covid. He said I had a brain of an 80 yr old. So for a year I have been getting Infusions to boost my immune system. He said ir looked like i had MS! The body aches were so BAD!! I have had no quality of life . Then my neurologist retired and referred me to one of his colleagues. He said the opposite. I WAS FINE AND I have Small fiver neuropathy. Well yes I know that but this is not what I am feeling. My ANAwqs positive. He told me it was a fake positive?? WHAT? Then I asked him for a referral to a rheumatologist and he wouldn't give it to me. I'm just frustrated! I thought covid was almost gone but I'm telling yall it's back and it is bad!

celia16 | @celia16 | Jul 9 8:09pm

Does anyone know if positive ANA can reflect hypothyroidism, type one diabetes, or psoriasis? Especially, if other markers are normal.

lowrymal50 | @lowrymal50 | Jul 10 12:05am

In reply to @rarelybees2889 "Go to Mayo if you can" + (show)

How do I get in. Now I have Acute bacterial bronchitis. I can't breath, coughing, wheezing! Now on inhalers, cough meds, medrol pack and amoxicillin! I've lost 2 years of my life to.long c9vid. I was finally feeling better and I got COVID AGAIN. Now, it is all starting over again. I can't live like this. I want to see my grandbabies. I'm only 53. No one gives a crap!!! I've been crying all day!

hammock117 | @hammock117 | Jul 11 11:06am

In reply to @lowrymal50 "How do I get in. Now I have Acute bacterial bronchitis. I can't breath, coughing, wheezing!..." + (show)

Try to keep positive thoughts. Especially with breathing issues, stress causes anyone with Lupus to have a flare with everything else. Pray for healing, listen to soft music. Watch a funny movie. Again stay positive..stress can kill us.