MCTD

Posted by andromeda5845 @andromeda5845, Feb 6 8:18am

Hello. I’m a 49 year old woman living with pain and weird symptoms(hair loss, GI symptoms, dry eyes, pain everywhere) every single day. I’ve been to several specialists with different opinions for the better part of four years. I had a positive ANA ordered my gastro and was told
Not to worry about it. Symptoms continued and was finally referred to a rheumatologist a few weeks ago. I have a positive RPN but it’s only 1. Not sure if this means I’m not positive or if it needs to be higher to be considered positive. The pain in my body has made me quit my career and I’m presently barely working. My apt to go over labs and X-rays is tomorrow. Does anyone have any insight on this? I’m trying to prep myself for this apt and what to expect. I feel so frustrated it’s taken this long to get here and wonder if the damage to my body is going to continue to worsen if docs don’t take this seriously. I went from running and every working every day to a body I don’t even know anymore. Any insight is so appreciated.

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andromeda5845 | @andromeda5845 | Feb 10 7:35am

In reply to @celia16 "Have you tested vitamin levels?" + (show)

Yes, I had copper toxicity for months which led to crazy anxiety and stomach issues. Got it down with supplements and had to be tested for Wilson’s disease which was negative. I have many deficiencies including b12 which I know take injections for.

andromeda5845 | @andromeda5845 | Feb 10 7:38am

In reply to @slkanowitz "The high ANA and RNP does point toward MCTD. Prednisone should give you some immediate relief..." + (show)

Saw my Rheum this week and she wont diagnose me with an autoimmune. My RNP was only at 1.1 and said it needs to be at 3 for diagnosis. I do however have osteoarthritis in every single part they scanned so I’m on prednisone for six weeks. Hoping this helps!!!

andromeda5845 | @andromeda5845 | Feb 10 7:40am

In reply to @breas "With your syptoms and positive RNP sounds to me like you like are having a autoimmiune..." + (show)

Prednisone for six weeks but no diagnosis other than osteoarthritis . Frustrating. Still sever gastro symptoms that nobody can figure out.

Deedee | @deedee4 | Feb 19 11:29am

I am 55.5 and was diagnosed with mctd last fall and the rheumatologist prescribed hydroxychloroquine 200 mg once daily and then increased my dose to 200 mg twice daily which I had to back off to every other day due to the ocular toxicity, BUT this drug really hasn’t helped me much. My severe brain fog , fatigue , stomach issues and throat soreness are still there and maybe even worse. I’m keeping a symptom log also. My rheumatologist referred me to another rheumatologist and I also have an appt now with a neurologist. I’m struggling to keep up with my job also. I don’t even think that my rheumatologist fully understands my symptoms and wonders why I would have this much brain fog :-/! Doesn’t help my cause

roscop | @roscop | Mar 17 8:14pm

I'm going through the same. This is all since 2022. They come in flares. Always feeling bad but the bad days are awful. Have you been tested for EBV? I also am wondering if there is Environmental issues triggering sever allergies and Histamine being over acted.

januaryjane | @januaryjane | Mar 18 3:43am

Sorry you're suffering so much. It does usually take a little time to get a correct diagnosis so hang in there! Hair loss could be a lot of things like stress, hormones even some medications can cause it. My mom has Osteoarthritis and has very bad pain. You need to keep checking your calcium levels as it's easier to get osteoporosis. Have you ever had any upper or lower scopes? I had my first upper scope a year ago and there were all of my problems! Chronic gastritis. But I'm still working that out! Xanax is short lived, so kind of a weird one I would pick to help with sleep. What else have you tried for sleep? I would suggest trying different avenues for sleep. Maybe a sleep study would shed some light and it would be good to rule out sleep apnea.

januaryjane | @januaryjane | Mar 18 3:53am

Oh and you do need to do your homework and learn more about possible conditions and what your tests mean. It's smart to be an advocate because most doctors don't have the time to do that for all of their patients. My advice when bringing your new found wisdom to doctors is to tread lightly. Most people don't want to be told what to do so I've learned to weave my symptoms, test results and any new knowledge intricately into an in person conversation at my visit. It's about timing and feeling desperate but not acting desperate. If that makes sense.

andromeda5845 | @andromeda5845 | Mar 18 6:02am

In reply to @deedee4 "I am 55.5 and was diagnosed with mctd last fall and the rheumatologist prescribed hydroxychloroquine 200..." + (show)

I’m on my third rheumatologist!! To add fuel to this fire they also found that I had extremely high levels of copper in my body. Being tested for Wilson’s disease and five different specialists. The first one literally came out and told me that she knows I’m very ill but doesn’t know how to help me. So frustrating!!!

andromeda5845 | @andromeda5845 | Mar 18 6:06am

In reply to @roscop "I'm going through the same. This is all since 2022. They come in flares. Always feeling..." + (show)

It’s funny you say that because yes, I have been tested for EBV twice. My boyfriend tested positive a few months back so I asked to be tested and it was negative. Shows that I’ve had it but no new infection. My histamine is still off the charts and it always feel like I’m fighting off a really bad cold. When I’m not feeling well I take enough antihistamines that should knock out a small village but I still cannot sleep. Terrible!!

andromeda5845 | @andromeda5845 | Mar 18 6:12am

In reply to @januaryjane "Oh and you do need to do your homework and learn more about possible conditions and..." + (show)

Yes, I’m learning that they do not like the fact that I do my own research. I recently Asked my gastro about using different supplements (L-carnosine) to help heal my stomach lining and she laughed me off. I was put on a PPI and it gave me terrible heartburn which I never had before and I was told to stay the course. Stayed on it for a month and It eventually got so bad I had to take myself off of it. I learn things about my conditions every day as they are ever changing and it’s sad that the docs trusted to treat you aren’t doing the same.