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Tessa Message
26 Feb 2014, 09:28 PM

When were you diagnosed with MCTD? Were you told you had RA or Lupus or some other disease first? Were you aware long before your rheumatologist that you had something more?
rsporco Message
27 Feb 2014, 03:03 PM

Tessa, I was diagnosed about a year ago and have the same afflictions as you. I had blood panels that strongly indicated MCTD. I am being treated for LUPUS/RA at the moment but looking back a few years I believe I exhibited RA then but was misdiagnosed with OSTEO. I had some serious muscle issues and was misdiagnosed with Myotonia Congenita. After changing my primary doctor I was sent to the proper specialists and correclty tested. My current rhumy has done a great job of getting me feeling better so I can do more, although I have flairs now and then. Over the years I have gotten used to the constent pain and discomfort. Short of narcotics it will always plague me.
Tessa Message
27 Feb 2014, 05:36 PM

Do you also present Raynauds ? I am always in a state of pain as well, sometimes more than at other times. I have a pain in my jaw from time to time pain going along jaw line to ear. It hurts like crazy, but is temporary. My biggest concern is the chest pain, I read this can cause pulmonary hypertension. Yikes! That's serious stuff. I hope to get more info. Do you know of any organizations that provides info on MCTD?
jjjamerson Message
8 May 2014, 08:09 PM

Tessa, I presented with Raynauds for years before the rest of me started going downhill. I have been super healthy all of my life and very active and fit. This has been a shock. I was diagnosed relatively quickly and began on meds. At this point I have cut back on some of the meds and am doing well. However, I have issues with my lungs whether due to MCTD or not I'm not sure. Pulmonary hypertension is what my rhumy told me could make my life much shorter. If you are having problems please check it out. I have no idea what they do for that but I know it is very serious. I have just googled for info. Recently I downloaded a report from
joyus1s Message
26 Aug 2014, 06:19 PM

I was diagnosed 4 years ago but I have had "flares" or symptoms since I was about 19 years old.. I am now 53. At 19 I had had costochondritis (is an inflammation of the cartilage that connects a rib to the breastbone (sternum)) and it felt like I was having a heart attack...this maybe what you are having. All you need are anti-inflammatory meds and total rest. It will go away. Also at 19 I developed a butterfly rash on my face and upper arms that no one could diagnose because it wasn't lupus (did not show up on a test). So I had that 4 8 years and it was called "polymorphous light eruption" because it got worse in sunlight and with a lidex cream it would fade. After about 8 years it went away. Then in my 30s I had IBS for a year (went away), had Nipple Vaso Spasm (Nipple blanching (turning white) after breast feeding, occurs when the blood flow to the nipple is limited or cut off) also a form of Reynauds Phenomenon (an autoimmune symptom). Then I had my hands swell like sausages (huge) for about a month (doctor told me I had a virus) then I had palpitations that lasted for 9 months! I have had costochondritis once again. Then in my 40's I started having this chronic pain in all of my muscles...doctors say that I need to stretch or that I have joint pain and it is osteoarthritis...I get a knee replacement (which was fantastic and went very well) but swelling and soreness in muscles doesn't go away. I get numbness in both hands (neck inpingment)... then there is incontinence which comes and goes...List goes on and on. I look normal on the outside but I am constantly battling pain or something health wise. I lose my voice for no reason every few months...and the only way I feel normal is when I go on prednisone (which I try to avoid because it is soo bad for you). So people don't realize that certain activities are impossible for me because I look alright and I'm not acting sick. I am not convinced that I only have MCTD and Hashimotos because many of my symptoms are like MS, but then again my mother has Vasculitis (Wegeners) so I inherited this from her. I am afraid that we are doomed to have these multiple and frustrating symptoms for the rest of our lives and must somehow endure it . Currently Lyrica is working for me, and I also take B12 supplements every day (that made a difference too). I don't trust my doctors because they take this disorder too lightly (my Rheumy calls it "Lupus Light" yet everything I have read on it suggests otherwise. My neurologist wants to just wait and see as my MRI has demyelinating spots on it "but nothing serious" My endochrinologist has me on synthroid and says that he doesnt' want to see me for a year! So I feel abandoned by the very people that could alay my fears. So I am now looking to quackery..or alternative methods to treat my symptoms. Tapping worked to make me feel a little better...don't know if actually works but if it makes me feel better...why not?
wildrice Message
10 Nov 2014, 08:35 AM

Goodness, I feel badly that no one has responded to you in 2 months Joyus1us. I too have Hashi's with the CTD and many years of fibro and other weird symptoms that were ignored like geographic tongue that I thought was a latex allergy so ended up having all the skin prick allergy testing done only to end up at the ENT who asked me if I had lupus because this tongue condition is commonly seen in lupus patients. That sent me to the Rheumatologist real quick. Oh well. I think we probably all have crazy stories to tell. I just discovered this site today when doing some research but have been involved in the FB group for about two years. Good luck to you all.