View Full Version : connective tissue disorder
12-29-2011, 09:57 PM
Is there a link with Hashi's? It is the only possible thing that could explain the pain I am in and my mixed blood results...on again off again results as per usual. Nothin special, nothing definite. Had enough though. Completely fed up. In so much pain and nothing touches it. Got some prednisolone so hopefully that helps.
I don't have any experience with either MCTD or Hashimoto's. However, here is a quick link to a bunch of posts about Hashimoto's here onsite-
You may find some useful info in some of these posts.
Hope this helps,
Marla has MCTD. You might want to talk to her
12-30-2011, 11:48 AM
So sorry you are feeling this way Shine. It WILL get figured out believe it or not. We are here for you in the meantime. I too have blood work alll over the place. THat doesnt mean squat! One of my GOOD drs said "a GOOD dr wont look at blood work alone to diagnose a disease, because MANY times nothing shows up in the blood". Find THAT kind of dr to help you through. GOOD LUCK and keep us informed!
12-30-2011, 12:33 PM
Yes, my great rheumy back in Texas called mine MCTD. I had the same problem that you are having with the rheumy before her - he kept saying that there was nothing definite, so there was nothing to treat until something emerged as a definite.
The great rheumy looked at the results and told me that I was on the low end of positive for Lupus, RA and Psoriasis, with a slightly higher positive for Sjogren's. (I later had a lip biopsy at the Sjogren's center in SF that confirmed this - the score was a 1 - a low positive). I also have Meniere's, Spasmodic Dysphonia, some Raynaud's symptoms and spastic legs that might be spastic paraplegia. She looked at my symptoms overall, and noted that cumulatively, it was all making me pretty miserable, so of course, it should be treated.
Unfortunately, we've moved and now I'm back to another rheumy who doubts it all.
There are so many AI diseases, and it seems that MCTD can include just about any combination of them, so I wouldn't be surprised if Hashimoto's could be one of them.
Hopefully, you can find a doc who can explain this and will treat you.
01-02-2012, 10:30 PM
Thanks guys, you are all great :)
I've spent some time going over old blood work and seen that the two results that keep standing out are:
ANA positive #1 pattern homogenous titre 1/640 (when titre of 160 or more has strong likelihood of SLE)
Anti dsDNA elevated at 14.3 (when <8.0 is considered normal)
Apparently this means nothing! Or according to the doctors I've seen anyway. Everything else is negative...serum RF, CRP, ENA, the lot!
I know it must mean *something* though....the hashimoto's and therefore hypothyroidism (responding well to meds) the blotchy face, the aching joints, exhausted muscles, extreme fatigue...and the ANA/dsDNA results. Back at docs again tomorrow for second lot of dsDNA results so fingers crossed something happens.
Last time I was there he put me on 25mg Solone for 10 days. Only been a few days so not felt any improvement yet but staying positive. I have to get better! Now my thryoid is up and running properly I feel mentally less exhausted, just want my body to catch up now,
Thanks again everyone and any ideas on what the bloodwork could mean would be great. Thankyou :)
01-03-2012, 03:31 PM
Good Luck with your appt. tomorrow, I hope you get some answers. I have several AI's with positive results, so when I go the the doc's with questions I often get the "you are very complex" Duh!!! that I know. But, truthfully, my doctors all do listen and treat me well, so I guess I'm pretty luckly about that. I can't tell you what your blood results could mean, other than most likely it is an AI, with additional test your doctor's hopefully will be able to tell you more.
01-04-2012, 04:12 AM
Had my appointment. And the doc says (drum roll please...) It's LUPUS!
I thought I'd feel more relieved than I do because I've been dying for a diagnosis for bloody ages...I just hoped it would be a diagnosis of something that would go away :(
I can't afford to see a specialist and I'll be moving from the area before I can wait to see the free one, so the GP said he'll see what he can do for me in the meantime. Just got to keep on with the Solone for a bit and see how it goes. That's the thing, even though there's a diagnosis there isn't a clear treatment plan is there? Thats what I wanted...I diagnosis, a clear treatment plan and then kaboom! Back to normal.
Just don't know if I'll ever feel human again. I can't imagine being back to how I was.
I am very glad that you got the diagnosis! I know it causes mixed feelings but at least there is a direction to go. I also understand about not being able to see the specialists. I saw them for 2 years until all my insurance and money ran out so I am with a GP now trying to buy time until my Medicare comes in.
It is going to be OK. He/She can help you feel better than you do now. It takes awhile and there will be good days and bad days but there is hope for a "new normal" and we are here for you as you take this ride.
01-04-2012, 02:43 PM
WOO HOO to getting a diagnosis, FINALLY!!!! It's Bitter Sweet isnt it? My family and I felt that way when the diagnosis's started rolling in!
01-04-2012, 10:36 PM
At least you now have a positive diagnosis. It sounds like you have a caring GP, who will work with you on finding a good combination of meds to get you feeling better until you can get situated with a rheumy.
Lots of luck.
01-05-2012, 04:49 AM
a diagnosis is the first step.
i am happy for you.
i hope you can get "back to normal".......
most of us have a new "normal",
as we cannot get back to the old "normal".
01-05-2012, 09:14 PM
What do you all mean by "new normal"? Surely if the meds work then I should be able to get back to normal normal? Am I being naive?
I just want to be the one who gets up before everyone else in the morning, who practically skips everywhere, who dances like an idiot, who doesn't have to use the handrails, who can sit down without groaning, who can work hard and play hard, who doesn't have to worry what will hurt when I wake up in the morning, who doesn't have to say..."no I can't do that today." I'm 25 for foofs sake. I don't want to be so limited :( This is getting me so down. I have bipolar too and I'm struggling already. :( :(
01-05-2012, 09:59 PM
Some people have a remission once they get on the right meds and do feel great like what you described - especially younger folks like yourself.
I'm 54, and I've slowed down a lot. There are others here who are the same age and they are pretty active. Everyone is different.
Be sure to talk to your doc if you having problems coping. He/she might have to adjust your meds for the bipolar disorder as you work out the right meds for the lupus.
01-06-2012, 08:12 AM
everybody is different.
so our normal can be different also.
i am no longer able to work.
i have recently had a few issues with my brain going into a pause,
so my new normal is not what it used to be.
some people get back to the old normal .........
but i am far from that lucky.
remember everyone reacts differently to lupus,
and lupus medication.
so your normal will be yours, not the same as mine.