Newbie, new to the dx, but not to the symptoms

Hello Everyone !

Just came across this site today. Which is odd because I've been googling MCTD for months now. It's nice to know there are others out there in the world who could relate to what has become my life. Although I have frequented lupus and MS boards over the last 9 yrs and had wonderful support.

I am Christina, 37...mum of 3 the youngest is 3 and the oldest is 14. The Dr's have believed I had an autoimmune issue for 9 yrs now. And I only recently got a diagnosis a few months ago. Well that diagnosis I was given was "Lupus Like" it wasn't until I questioned my Rheumy about the high RNP in the past and asked what the difference was between that and having a high Sm/RNP this last time that he said the words "Well you have MCTD, that's what it signifies. W/ MCTD we treat it based upon the connective tissue disease that the symptoms are most like. For you, it's RA, Lupus and myositis."

9 yrs ago I heard the words Lupus as a posibility when the neurologist my PCP sent me to shrugged off her thought of me possibly having multiple sclerosis. But when my ANA came back as only being a low titer even tho it was speckled and I had a high RNP he said there was no chance I had Lupus or any other autoimmune disorder.

I've been all over the place with symptoms. Many of which seemed neurological...vertigo, coordination issues, brain fog/mental confusion, numbness, electrical pains, muscle pain, hearing,loss, optic neuritis, newfound severe clutziness, irregular heartbeats, puffy hands/feet, severe pain from the waist down. Everytime a new symptom started up the Dr's would start testing for MS all over again. Eventually I gave up. And it wasn't until my 14 yr old daughter's podiatrist saw joints in her foot that were suggestive of rheumatoid arthritis and asked about family history that anyone ever suggested I see a rheumy.

But it's funny, I started having joint pain in multiple joints (i've had flares of pain and swelling in my right wrist since I was 15 that I learned to ignore after I was told there was nothing wrong) on both sides back in August (I actually thought it was the stress of student teaching wearing me out) and went to my PCP before going to a Rheumy. And they said that there was no way I had an arthritis type condition because my joints weren't red, hot or excessively swollen. So I found it quite interesting when the rheumy poked at my joints and commented how they were swollen.

So in Nov, I got the "Lupus like" dx a week before my daughter got the official RA diagnosis from the pediatric rheumy. I found having my daughter get a RA diagnosis (unexpectidly...she went from being healthy playing ice hockey, to complaining about vague pains, nausea and vommiting almost over night. On days when she can't dress herself or open doors, it's hard to believe that less than a yr ago she was playing ice hockey 2-3 times a week) is even more emotionally draining than dealing w/ the unknown I've been dealing with for the last 9 yrs.

My rheumy has me on plaquinel right now. He had me on it for a few months but when I complained about vommiting on it he switched me to methotrexate. Methotrexate made me feel like I had the flu for 3 days after taking a dose. SO I had him put me back on the plaquinel. He wants to try me on that new lupus IV infusion med, benlysta. But I am not so sure I am willing to try it. it's too new. and well it's too expensive even with decent insurance when my daughter is already on Enbrel.

The one thing that I could use advice on, is how do you keep a full time job with all this? I've always been career minded, and I've tried to go back to work a few times since I started having these flares. And the flares just get in the way and I end up not being able to work. I struggle to just keep up w/ my 3 yr old and my 14 yr olds physical therapy appointments. And because I can't keep a job for any length of time we are living with my husbands parents. i feel like I let him down. I was an acupuncture intern finishing up my licensing and degree requierments and teaching outdoor science with a toddler when the first identifiable flare hit. It took me 10 months to get over the hump of that flare before I was even able to walk without falling over or drive. 2 yrs before I was able to walk a decent distance without a cane. With each flare there is always some symptom that sticks around on a daily basis even after the rest let up. And while it seems my flares are not as long as that first one, they are coming more frequently. And then flare or not, once a month about a week before my monthly cycle I have an increase in symptoms/severity.

Sorry, didn't mean to ramble on. Just not used to having opportunity to pick anyones brains who could relate.

I look forward to getting to know you all and being there for one another to help each other through the rough times and to laugh during the good times.

Christina

Hi Christina,
welcome to the forum.
I've never been able to work full time with this illness. As well as the flare ups getting in the way of my working life, appointment times do too. I have had many situations where I have given plenty of notice to my boss for an appointment & then they have forgotten to schedule me out of work for that day & it causes a whole lot of hassle. I know this isn't my fault but it just causes friction in the working enviornment & also when trying to explain this illness I just get odd looks.
I have now decided to stay part time & try to avoid talking about it as much as I can. Sad times.

Hi Christina, Welcome.
I too had been looking for ages for a forum or SOMETHING for MCTD, when I found Project MCTD Aware on Facebook. Abby (and a bit of credit to Matt) has done a phenomenal job putting all of this together!
Hope everything settles down for you soon.

Thanks for the welcome

Thanks, I too hope things settle down for the both of you.

Hi Christina, some of what you describe fits my situation perfectly, except I have been on the roller coaster for a longer period of time.