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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Becky, Volunteer Mentor | @becsbuddy | Jul 2 6:52pm

@mattymatilda. You are very lucky to have those doctors who took the time to come up with a diagnosis . How long have you had lupus? Do you feel that you’re getting good treatment? And, I had no idea that lupus could cause hearing loss. I’m so glad that the ENT found it. Thank you for bringing this subject up!

kcalby | @kcalby | Jul 3 5:17pm

Does your bloodwork show anything or does it masquerade as passably normal?

mattymatilda | @mattymatilda | Jul 4 1:18am

In reply to @becsbuddy "@mattymatilda. You are very lucky to have those doctors who took the time to come up..." + (show)

I am very grateful to my ENT. Amazingly when they discovered my lupus, I had been seeing a hematologist for about a year and a half actually I saw two hematologist over a two-year span prior, And neither of them ever tested me for lupus. Where I live, the ANA test must be requested. It is never done on your annual CBC test and was never done on any of my polycythemia CBC blood tests which at times I was doing every 3 to 4 weeks. so please request that your doctor do an ANA test on you because it’s either negative or positive. my first rheumatologist went back-and-forth multiple times between MCTD and Lupus. my PCP finally sent me to another rheumatologist who immediately did CBC Test and also AVISE TEST. He was immediately able to definitively diagnose me with lupus. I hope this helps someone.

mattymatilda | @mattymatilda | Jul 4 1:20am

In reply to @kcalby "Does your bloodwork show anything or does it masquerade as passably normal?" + (show)

Hi. No, it does not show up in a standard CBC that your doctor would do. I’m puzzled that they don’t include this one little test that would benefit so many people. Please ask your doctor if you have any suspicion of lupus or rheumatoid arthritis, To give you a CBC that includes testing for ANA.

mattymatilda | @mattymatilda | Jul 4 1:31am

In reply to @becsbuddy "@mattymatilda. You are very lucky to have those doctors who took the time to come up..." + (show)

I forgot to answer your question about my diagnosis. I was diagnosed about a year and a half ago, but I had had the Lupus for at least two years prior. Lupus is a strange illness because how you feel can very greatly from day-to-day. My first medication was Hydroxychloroquine. It was Not effective and was also could have caused me eye issues per my ophthalmologist. Then I tried azathioprine. No results. Then I tried methotrexate. Found out After going to my new rheumatologist that I had toxicity using methotrexate so he immediately took me off of it. He is prescribed Bynlista injections but I have not been able to start the injections due to financial issues. I’ve received two months of the injections and they are just sitting in my refrigerator for now. Once I’m able to take the injections, I will update you If it’s working well or not.

kcalby | @kcalby | Jul 4 1:48am

In reply to @mattymatilda "Hi. No, it does not show up in a standard CBC that your doctor would do...." + (show)

Oh ok so you have Ana markers then eh, yeah mine doesn’t show anything for Ana. Sounded similar but I suppose not 😅

lowrymal50 | @lowrymal50 | Jul 5 1:13pm

I have been having issues with doctors. My ANA was positive with titer of 1:80. Dr says he thinks it's a false positive?? I have all the symptoms of Lupus. I have had long covid for now 2 years. I just got covid AGAIN! THIRD TIME. I am now seeing floaters in my eyes. The body aches I've had for 2 years r awful. I can't even explain everything on here but my neurologist will not send me to rheumatologist when I requested it. I was getting IVIG infusions to boost my immune system. Well my new neurologist took me off of them. Now i have COVID AGAIN. I'm just frustrated, tired, depressed, sick!!

mattymatilda | @mattymatilda | Jul 5 2:15pm

In reply to @lowrymal50 "I have been having issues with doctors. My ANA was positive with titer of 1:80. Dr..." + (show)

I’m very sorry to hear what you’re going through. Autoimmune diseases are so difficult to pin down and diagnose. I know what Infusion you’re referring to. Strongly recommend you request an AVISE blood test. It will give your doctor much more information on what your condition may be. I wasn’t given the test and didn’t know it even existed For over a year. Good luck

slkanowitz | @slkanowitz | Jul 6 2:50am

Yes, the Avise CTD test is more sensitive and complete. It’s dismissive to tell someone their positive ANA is a false positive when symptoms of lupus are present. I would certainly seek a second opinion! I can’t tell you how many times I have heard this story from patients who have numerous symptoms of an autoimmune condition and positive ANA that is ignored by rheumatologists. It’s as if they just don’t want to bother running additional tests and end up prolonging someone’s illness for years! Please get the Avise test and a new rheumatologist.