MCTD (Mixed Connective Tissue Disease)

Posted by EllashaB @ellashab, Oct 3, 2011

Ok, here goes my story….4 Weeks ago I was diagnosed with Mixed Connective Tissue disease…I am normally a busy busy person, I work full time as a police officer, volunteer at my church, work a lot of off duty, and I have Three Boxer Dogs that I show, and I’m married…so I have a lot going on and this has pretty much put a stop on everything…I’m on 30mg of Prednisone, Plaquenil, Imuran, and Amitriptiline (for depression, anxiety), and Nexium twice a day…Some days I’m fine and other days I can’t get out of bed either because I’m so tired or I’m having a flare. I would just like to talk to other people who have this disease and who can relate to me. I feel like I’m losing my mind and body for that matter…..Is it always going to be like this? How do I slow myself down? The concept just seems so alien to me….HELP

@cary Supertylenol, 4000

REPLY
@lauramorin

I was diagnosed with MCTD in 2013 and misdiagnosed with fibro many years earlier. I was most recently and correctly diagnosed with sjogrens/lupus. So this can be a tricky diagnosis but definitely manageable! First and foremost find an rheumatologist that will become an advocate and if not a rheumy a good internist (that’s what I ended up with) and your are a busy lady as was I and that’s actually a huge benefit that you do not want to forfeit. Even on your worst days, do not give in. Pull up the big girl pants and forge ahead. You will feel better for it, I promise. Go to bed early if you have to but do not give into the couch, its your worst enemy. Beware of the drugs….prednisone and plaquinil for a long time are not your friends. Also I don’t care what the TV says Cymbalta is like heroin it will be the worst detox of your life. So is the other drug they push on TV for Fibro, don’t take that one either. Methotrexate is
another tough drug but can be helpful. Exercise and a low dose anti imflammatory are your best friends a good diet and good sleep and again do not heed to the couch/bed on bad days. Keep in touch with your doctor and pay attention to you. Also helpful is heat I have found. Just be good to you and do not get over tired I have found that I have had to learn to say NO! to a lot of things in life. I worked full time, volunteered almost full time, had two travel ball players (one national) a husband that traveled year round and I learned to draw hard lines in the sand. I also learned to listen to my body when enough was enough I listened. I will help I promise. Flares are tough but remission is wonderful. If your doctor sounds like he is full of crap he probably is – find another one, this is largely uncharted territory, MCTD is just waiting to become something else typically RA, Sjodrens or Lupus. Take care and be good to you. I am happy to talk or listen anytime, PM me, my auto immune disease took on a whole journey that became a mayo study, too long for here. I wish you well. :0)

Jump to this post

@johnbishop wow john l have read some of the post. And after l had my surgeries especially the last one for foot drop thats when l started having the problem. I was told it was neuropathy so they gave me tramadol which l try so hard not to take unless l am in so much pain l want to scream. I remember when l had my back surgery l didn't know when l came out of surgery. People came to visit l dont remember anyone. My best friend came as l was asking here did l say something to you l shouldnt have? She said no. And then when l had my foot surgery my doctor said he had to call my gastroenterologist to find out about the meds they gave me in surgery and he was scared when he was telling me the story. He told me when l came to see you, you didnt know who l was or my name. So now l was sent to my first rheumatologist and l didn't know why or what doctor sent me. Then when l went to here she asked me the same question. Then she looked in the computer and found out the whole story. Then she tested my ana twice and told me it can come back positive but really can be negative. Then when l went to the mayo clinic my counts was higher but they didn't tell me to follow-up with a rheumatologist at home instead the neurologist there had me go to 2 psychiatrist and then had me scheduled for the third but cancelled it. Then she said you should go to behavioral therapy but l think she was confused herself because when l first saw her she said lve be a neurologist for a long time and she gave me a website for conversion disorder. Which now they changed the name but it still the same. And l said to myself you may be a neurologist along time but my God is the great physician and he know more than you. So l think they were a little confused because they said l had the symptoms of autoimmune encephalopathy but its not showing up. Well l knew l had that because l had the liver procedure. Then the vascular doctor told me there wasnt any blood flowing to one vein. He was going to talk to his colleagues and if l needed my procedure done again then they would schedule me to come back. They scheduled me to come back l thought l was going to.have the procedure done. I call the department and the nurse said no its a consultation. My grandkids came all the way from Tennessee to have the first Christmas with there grandparents and for one day l saw them and then l was heading to the mayo clinic. I went for the consultation and the next day l.checked out the hotel to come back home. Then l saw my grandkids forban hour before going home to go sleep after the long drive. And the hepatologist out there told me everything l was going through for 4yrs and the doctors here thought l was crazy. So it was good to see him but l wish it was at home instead of a 12hr drive. And then l went to the new rheumatologist and he thought l was out of my mind coming to him since l went to the Mayo Clinic and they didnt refer me to a new rheumatologist or to tell me to get one. So then he ran all these blood work and he thought he wouldn't find anything he was just doing it to please me. And then set me up for a return visit for 6months. Then his nurse calls and says he was sending me a prescription to my pharmacy. Now he wanted to see me in 2months. Now l do like him in spite of what he said because it was my first visit with him. And as l told you before l was to see him today but because of the weather l see him next week. But like l said before they don't know more then God. And l know l will be healed soon because with over 20yrs with cognitive and memory issues to now writing a book and going back to school. Its even shocking my PCP how l got my memory back. He just looks at me everytime l see him just to get shots. I havent seen him for an appointment since February last year and he hasn't seen my records from the Mayo Clinic and they didn't send him any because l never told them about him. So l guess l can have autoimmune encephalopathy and then also have mixed connective tissue? I am not sure but a s l was reading some of the post you can have more then one. And l am not going to let him give me anymore meds. I will just use my compression stocking and continue to take the tramdol like l said before because when some pf the doctors were taking me off the meds. I haven't been falling and my confusion has cleared up. And now l am driving without fear like l was before because of not driving for 2yrs. I have been reading Joseph Prince book Live the let go life and l know you know about that. And now that my sister is going through her issues l told her to read it because she is having some memory issues and shes afraid. Ive been there so l know what's she's going through even though she didn't know what l was going through. And l know it fear you struggle with when your doctors don't listen or have the time to research or talk to their colleagues to learn. You know because you help us all and like you said you have to be you own advocate even though you are paying them and you get no answers. But so far l am getting some doctors who are not afraid to listen and sometimes be wrong and learn from there patients. Its hard to find them butbwhen you find them just hold on to them. Your the greatest and God sees all you do….

REPLY
@lauramorin

I was diagnosed with MCTD in 2013 and misdiagnosed with fibro many years earlier. I was most recently and correctly diagnosed with sjogrens/lupus. So this can be a tricky diagnosis but definitely manageable! First and foremost find an rheumatologist that will become an advocate and if not a rheumy a good internist (that’s what I ended up with) and your are a busy lady as was I and that’s actually a huge benefit that you do not want to forfeit. Even on your worst days, do not give in. Pull up the big girl pants and forge ahead. You will feel better for it, I promise. Go to bed early if you have to but do not give into the couch, its your worst enemy. Beware of the drugs….prednisone and plaquinil for a long time are not your friends. Also I don’t care what the TV says Cymbalta is like heroin it will be the worst detox of your life. So is the other drug they push on TV for Fibro, don’t take that one either. Methotrexate is
another tough drug but can be helpful. Exercise and a low dose anti imflammatory are your best friends a good diet and good sleep and again do not heed to the couch/bed on bad days. Keep in touch with your doctor and pay attention to you. Also helpful is heat I have found. Just be good to you and do not get over tired I have found that I have had to learn to say NO! to a lot of things in life. I worked full time, volunteered almost full time, had two travel ball players (one national) a husband that traveled year round and I learned to draw hard lines in the sand. I also learned to listen to my body when enough was enough I listened. I will help I promise. Flares are tough but remission is wonderful. If your doctor sounds like he is full of crap he probably is – find another one, this is largely uncharted territory, MCTD is just waiting to become something else typically RA, Sjodrens or Lupus. Take care and be good to you. I am happy to talk or listen anytime, PM me, my auto immune disease took on a whole journey that became a mayo study, too long for here. I wish you well. :0)

Jump to this post

Hi Laura, Thanks for sharing. Just wondering why you say Plaquinil are not your friend? I was on it for bout 2 years and feel like it made me worse, especially now after getting off it. While now at the same time, nervous I am not on it, as I hear with MCTD w/lupus type symptoms, I should be. Overall, feeling great without it, but vertigo just decided to settle in the last few days. Curious to your reasoning behind it, though. Thanks again.

REPLY

I was diagnosed with MCTD in 2012. It surely has not been an easy road for sure not. You learn hpw to take one day at a time literally. In the back of your mind you will wonder when am I going to have a gpod day. Or is this going to be a good day for me. This disease will get you down for sure and you will always think what can I do to make it better. We will have this disease for the reat of our lives. And we have to learn to deal with it. Fatigue is the number one thing with me. It sucks to have this and woth someone that doesn't have it qill never understand why you are the way you are and no matter how many times you explain it, you will always say the same thing. All you can do is pray that things get better and hope you can find a way to feel human again. Im not saying this rp get you down. I am saying it because like you WE live it everyday. I hope things get better and we can find a way to learn to live with tbis disease. I hope you get ypur spirit back. Do something you enjoy for you. That's what I try to do. Hope I said something to help you!

REPLY

Welcome to Connect, @baumgardtrose,

Thank you so much for sharing your insights; I know fellow Connect members will appreciate it, as well. Fatigue seems to be such a debilitating symptom; may I ask how you deal with fatigue? Do you have any suggestions or tips as to what works/what doesn't?

REPLY

It's really hard to tell you how I deal with fatigue. It can really get you down and I am being as honest as I can be. Rest can be a good way to deal with the fatigue you have. It makes me more and more depressed and it can make me quite upset. I am still learning about the MCTD and any input on it I would be very grateful so I can learn more to understand this disease. On my bloodwork, my level was 100. The value is supposed to be 0-19. Mine is pretty high. Ugh!!!

REPLY

Hello. I just got diagnosed with MCTD. I had been feeling very tired and had no energy. I was noticing that my body was aching for no reason. Right now I am waiting to see a Rumitoid Dr in June. Thats the earliest I can get in. UUGH. Been reading about this and it is very scary. I am 52 and feel like my life has been turned upside down. I am not where you are and I can still get out of bed but the aches and pains through the day is driving me crazy. My shoulders and arms ache the most right now. When I go anywhere my legs and hips hurt. So here I am in limbo for over a month. I hope your days are more better than worse.

REPLY
@imjustmissy

Hello. I just got diagnosed with MCTD. I had been feeling very tired and had no energy. I was noticing that my body was aching for no reason. Right now I am waiting to see a Rumitoid Dr in June. Thats the earliest I can get in. UUGH. Been reading about this and it is very scary. I am 52 and feel like my life has been turned upside down. I am not where you are and I can still get out of bed but the aches and pains through the day is driving me crazy. My shoulders and arms ache the most right now. When I go anywhere my legs and hips hurt. So here I am in limbo for over a month. I hope your days are more better than worse.

Jump to this post

I was diagnosed with giant cell arteritis ten months ago and had my first appointment with a Rheumatologist last week. What is MCTD?

REPLY

Hi @imjustmissy and @captainkenny– Welcome to Connect!

Missy, sorry about your new diagnosis- and Kenny, you too. I hope you can both spend some time looking around this community. You will find a ton of great information and very kind people- willing to share their stories and what they have been through, medically. I find it encouraging and easy to relate when I read a post about someone who has been living with a disease and they talk about how they get through. Peace to you both.

Missy, here is some information I was able to find on Mayo Clinic's .org site on MCTD- https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/diagnosis-treatment/drc-20375152

Kenny, how did you first appointment with your Rheumatologist go?

REPLY
@imjustmissy

Hello. I just got diagnosed with MCTD. I had been feeling very tired and had no energy. I was noticing that my body was aching for no reason. Right now I am waiting to see a Rumitoid Dr in June. Thats the earliest I can get in. UUGH. Been reading about this and it is very scary. I am 52 and feel like my life has been turned upside down. I am not where you are and I can still get out of bed but the aches and pains through the day is driving me crazy. My shoulders and arms ache the most right now. When I go anywhere my legs and hips hurt. So here I am in limbo for over a month. I hope your days are more better than worse.

Jump to this post

Mixed Connective Tissue Disease

REPLY
@jamienolson

Hi @imjustmissy and @captainkenny– Welcome to Connect!

Missy, sorry about your new diagnosis- and Kenny, you too. I hope you can both spend some time looking around this community. You will find a ton of great information and very kind people- willing to share their stories and what they have been through, medically. I find it encouraging and easy to relate when I read a post about someone who has been living with a disease and they talk about how they get through. Peace to you both.

Missy, here is some information I was able to find on Mayo Clinic's .org site on MCTD- https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/diagnosis-treatment/drc-20375152

Kenny, how did you first appointment with your Rheumatologist go?

Jump to this post

Thank you for your post. I don't get to see my Dr till June. Just want to know what I'm up against and what to expect next.

REPLY
@jamienolson

Hi @imjustmissy and @captainkenny– Welcome to Connect!

Missy, sorry about your new diagnosis- and Kenny, you too. I hope you can both spend some time looking around this community. You will find a ton of great information and very kind people- willing to share their stories and what they have been through, medically. I find it encouraging and easy to relate when I read a post about someone who has been living with a disease and they talk about how they get through. Peace to you both.

Missy, here is some information I was able to find on Mayo Clinic's .org site on MCTD- https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/diagnosis-treatment/drc-20375152

Kenny, how did you first appointment with your Rheumatologist go?

Jump to this post

It went well except it’s been six days and still waiting for approval from my insurance company for Methotrexate.

REPLY
@jamienolson

Hi @imjustmissy and @captainkenny– Welcome to Connect!

Missy, sorry about your new diagnosis- and Kenny, you too. I hope you can both spend some time looking around this community. You will find a ton of great information and very kind people- willing to share their stories and what they have been through, medically. I find it encouraging and easy to relate when I read a post about someone who has been living with a disease and they talk about how they get through. Peace to you both.

Missy, here is some information I was able to find on Mayo Clinic's .org site on MCTD- https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/diagnosis-treatment/drc-20375152

Kenny, how did you first appointment with your Rheumatologist go?

Jump to this post

After being treated for an itchy rash by a dermatologist for six months, including lots of blood work, two biopsies, and several meds to determine if the rash was a result of an allergy from all the meds I take, or related to my Giant Cell Arteritis (temporal). It was the right decision to start seeing a Rheumatologist, who regularly works with autoimmune disorders. I feel more confident with his care. Based on my pathology reports and initial exam, he added Methotrexate to my list of meds, which I started taking last week after my insurance finally approved.

REPLY

I know everyone has different symptoms at different times. I am not having to much problems with my hands yet. Some soreness and a few of my finger tips has numbness. My main thing is aches and pains in my shoulders. I usually have a headache every day. I have had some days that I felt pretty good but by the end of the day I am exhausted. Ive also had some pain in my legs like I have done major leg exercises. I'm just venting. would like to have more discussion with anyone that wants to chat. It feels like I am a lone wolf in my family. just feel like I can't talk about this because no one knows what I am feeling. ok thanks for reading.

Liked by Liyana Ahamad

REPLY
@imjustmissy

I know everyone has different symptoms at different times. I am not having to much problems with my hands yet. Some soreness and a few of my finger tips has numbness. My main thing is aches and pains in my shoulders. I usually have a headache every day. I have had some days that I felt pretty good but by the end of the day I am exhausted. Ive also had some pain in my legs like I have done major leg exercises. I'm just venting. would like to have more discussion with anyone that wants to chat. It feels like I am a lone wolf in my family. just feel like I can't talk about this because no one knows what I am feeling. ok thanks for reading.

Jump to this post

I know how hard it is when people don’t understand the fatigue. I have learned to set boundaries up for myself and limit my activities. I avoid stress, eat very healthy food and do stretching exercises and yoga. I am proactive and try to stay rested and being aware of my limitations has helped me decrease the number of days I feel fatigued. I go to physiotherapy which has helped with the numbness and as soon as my rash starts to show I take that as a warning I’m doing to much and I reduce my activities. Everyday is a new day with a variety of challenges but it is. Ice to know we can share on this forum.

REPLY
Please login or register to post a reply.