Mixed connective tissue disease - Looking for support

Posted by Liyana Ahamad @liyana, Sep 2, 2018

Hi everyone.. I’m new to this. So I have no idea how it works. My name is Liyana and I’m 29 year old woman who went from the never sit still lady to the can’t get out of bed Lady….two months ago I was tested and we discovered that me being sick all the time and out of shape is because I have mixed connective tissue disease. I have never felt so scared in my life. We have two little boys one is 4 and the oldest is 6. I can’t even enjoy play time with them because I just don’t have the energy to do anything lately. I haven’t started treatment yet. And I so scared to start it. In February I had a unexplained miscarriage and few weeks ago I had another. But now I know why. It’s so difficult for me because while others are having new babies I’m loosing them. I really would love to have a daughter still but being so sick all the time I doubt it will happen. I don’t have friends anymore because I’m no fun. So ya. A online doctor suggested that I go on Mayo Clinic and speak to others who has the same or similar condition because it will help me deal with it and understand it better. So I’m trying it now because I feel like no one around me understands what I’m feeling. I hope I can make some friends here.

Lyana, I am so sorry you are so sick. Many of us on here are in the same boat. I thank God, this did not hit me until after my children were grown. I have been diagnosed with RA and a potential Myloma. For the Myloma they are keeping an eye on it. The meds I inject for the RA kill off the Whtie Blood Cells. Without the White Blood cells I cannot fight off the Multiple Myloma. I am tired almost all the time. I nap off an on during the day. I walk my dog several times a day just to stay alert. The drugs they give us, make us sick or make us tired. I moved to Texas from Oregon. I lost the ability to buy Marijuana. If I used Marijuana, my pain was gone in 10 minutes. Hang in there. You are young. I am 76. I wanted to live until at least 80. We shall see. That is up to God.

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Hello @liyana

Welcome to Connect, I know it must be difficult for you to cope with these symptoms and I'm glad you found Connect. I'm tagging our moderator @kanaazpereira to see if she can move your post to the following discussion where you will meet others with Mixed Connective Tissue Disease and learn what they are doing to cope with these symptoms. It may be helpful to read through the following discussion and learn what others have shared about MCTD.

Groups > Autoimmune Diseases > MCTD (Mixed Connective Tissue Disease)
https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

@liyana are you able to share a little about how your doctors diagnosed you with MCTD?

Hoping you find some answers soon.
John

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Hi My new MCTD friends. Today I went to doctor I am in pretty bad condition., doctor read thru my notes in my medical notes book, and I have severe symptoms.,I’m on some strong medication (clarihexal 500 mg and exinef 90mg and prednisone 10mg and interflora 250mg as probiotic + nasal spray flomist) to keep me going till I see the rheumatologist 14 November. It’s long time to wait but my condition is rare here so we don’t have a lot of doctors that works with this condition of mine. I feel very down for some reason and at one stage felt like I would cry..but I swallowed hard and put the tears away. I mean I have to be strong. I still feel like I’m not dealing with what is reality because I don’t know why or how I got to this.., I mean no one in my family has anything like this and they never even heard about it. How do I deal with it because whenever I want to try all I want to do is cry. How do I put myself together again and live?! I’m so scared of dying while my kids are so small.

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@liyana

Hi My new MCTD friends. Today I went to doctor I am in pretty bad condition., doctor read thru my notes in my medical notes book, and I have severe symptoms.,I’m on some strong medication (clarihexal 500 mg and exinef 90mg and prednisone 10mg and interflora 250mg as probiotic + nasal spray flomist) to keep me going till I see the rheumatologist 14 November. It’s long time to wait but my condition is rare here so we don’t have a lot of doctors that works with this condition of mine. I feel very down for some reason and at one stage felt like I would cry..but I swallowed hard and put the tears away. I mean I have to be strong. I still feel like I’m not dealing with what is reality because I don’t know why or how I got to this.., I mean no one in my family has anything like this and they never even heard about it. How do I deal with it because whenever I want to try all I want to do is cry. How do I put myself together again and live?! I’m so scared of dying while my kids are so small.

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@liyana You are looking at a condition that will probably last through your lifetime. This is not to say that it should destroy your life. First there is a lot of confusion about exactly what MCTD is, and I know only enough about that to stay away. But I should note that almost every autoimmune disease gets confused with it. So keep making your notes in your book. I am including with this note my own set of notes, including my medical timeline. You can do the same thing. I don't really care if you cry or not, that is your choice. But do not let it define you or control you, or destroy you. And keep in touch. We all think we can define what you have, but because there are thousands of variations on both yours and ours (Mine is AL-Gelsolin, We are pretty sure) we can finally only do some educated guesswork. And good to meet you. Stop by some day! Old Karl

Shared files

Amyloid and Old Karl V 24 (Amyloid-and-Old-Karl-V-24-1.pdf)

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@oldkarl

@liyana You are looking at a condition that will probably last through your lifetime. This is not to say that it should destroy your life. First there is a lot of confusion about exactly what MCTD is, and I know only enough about that to stay away. But I should note that almost every autoimmune disease gets confused with it. So keep making your notes in your book. I am including with this note my own set of notes, including my medical timeline. You can do the same thing. I don't really care if you cry or not, that is your choice. But do not let it define you or control you, or destroy you. And keep in touch. We all think we can define what you have, but because there are thousands of variations on both yours and ours (Mine is AL-Gelsolin, We are pretty sure) we can finally only do some educated guesswork. And good to meet you. Stop by some day! Old Karl

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Thank you for your reply and the pdf file those notes and letter are very advanced. I sure hope that you can get medication that really helps you without affecting more of the other organs. I don’t recall reading your age? May I know how old you were when you got diagnosed and how old you are now?

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I am so sorry to hear about your health issues and diagnosis. I was diagnosed a year (just recently) after my twin sister was diagnosed with vasculitis (p anca positive) autoimmune disease affecting her kidneys. She went through hell trying to get help from local doctors. they blew her off as she got worse and worse. We finally got into mayo and just in time. That was a year ago. She is stable now. But I now have mixed tissue disease. I have lost 15 lbs in the last 2 years and doctors kept thinking I had body image issues and just wasn't eating.. Right now I only weigh 89 lbs. I usually weigh 105. I had such terrible neuropathy – my body felt like it was on fire. I started getting really bad headaches, ending up in the ER many times. I had headaches sometimes 8 days in a row!. I just saw a neurologist and now have nerve damage in my feet. I was just put on prednisone and gabapentin, so I hope I can feel better. I have been exhausted for over 2 years. Things just weren't right. my local doctor thought I just wasn't eating enough. I was so frustrated. tonight my feet burn and tingle, I can't sleep and I worry about my future. I applied for a job of my dreams in the place of my dreams before this diagnosis (knowing something was wrong) I am not sure if I would have the energy to do it.. and it may be too soon to take on something new and move 1400 miles. But I know people travel to Mayo from far away several times a year.. I feel that for my sister and I- our dreams just went down the tubes. We lost both parents in the last year and half as well plus our dog has cancer.We are both sad with having to deal with our illnesses, the loss of mom and dad and soon our precious Potter. We both thought that after mom and dad were gone, it would be our time to pursue dreams.. (we took care of our parents for 10 years)I hope that there is some light at the end of the tunnel and that we can be happy again and feel somewhat normal. Prayers appreciated.. since I can't sleep, I have been taking benedryl lately. hopefully that will kick in. Any suggestions on getting sleep? I couldn't sleep before taking prednisone and now it is really bad! I would appreciate encouragement from you all. Do any of you know of a support group which meets in person in Minnesota? I just joined this group as I am needing support. I live alone so I have a lot of time to think about stuff? Are any of you on antidepressants? thanks for any input and support.

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I will be your friend! I am much older than you, but feel your frustration and sadness about this diagnosis. I hope you have some family that will start to understand and really believe you have a serious illness. My brother was a total jerk to my sister saying she was crazy and just wasn't eating enough. She lost a lot of weight over 2 months. He still thinks her disease isn't a big deal. so we don't stay in contact with him. Ok I better go.. I need to go to work tomorrow and will put on a happy face while feeling exhausted, in pain etc. If people only knew how I really feel. I used to be in such great shape..hiking all over the mountains of the west, mountain biking etc. just feeling normal and now everything is an effort.. oh well. I hope your treatment really helps you and that you can take care of yourself and your little kids. I can't imagine having that responsibility and dealing with being sick. take care.

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@janicebengtson

I will be your friend! I am much older than you, but feel your frustration and sadness about this diagnosis. I hope you have some family that will start to understand and really believe you have a serious illness. My brother was a total jerk to my sister saying she was crazy and just wasn't eating enough. She lost a lot of weight over 2 months. He still thinks her disease isn't a big deal. so we don't stay in contact with him. Ok I better go.. I need to go to work tomorrow and will put on a happy face while feeling exhausted, in pain etc. If people only knew how I really feel. I used to be in such great shape..hiking all over the mountains of the west, mountain biking etc. just feeling normal and now everything is an effort.. oh well. I hope your treatment really helps you and that you can take care of yourself and your little kids. I can't imagine having that responsibility and dealing with being sick. take care.

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Thank you I’m looking forward to a friendship. I’m sorry for your Brother I’m sure he will come around still. I also have family that just don’t give a flying hoot they to busy thinking about themselves and draining me more. My in laws well now that’s my real family the only bad side to it is they are in India and I’m in South Africa. We have decided that if the doctors can’t help me here I will move with the kids their for a while. I don’t know how you manage work still? I think people don’t believe us because we don’t act as sick as we feel, but we have to look the way we feel..people would run from us. Hope you have better days.

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@janicebengtson

I am so sorry to hear about your health issues and diagnosis. I was diagnosed a year (just recently) after my twin sister was diagnosed with vasculitis (p anca positive) autoimmune disease affecting her kidneys. She went through hell trying to get help from local doctors. they blew her off as she got worse and worse. We finally got into mayo and just in time. That was a year ago. She is stable now. But I now have mixed tissue disease. I have lost 15 lbs in the last 2 years and doctors kept thinking I had body image issues and just wasn't eating.. Right now I only weigh 89 lbs. I usually weigh 105. I had such terrible neuropathy – my body felt like it was on fire. I started getting really bad headaches, ending up in the ER many times. I had headaches sometimes 8 days in a row!. I just saw a neurologist and now have nerve damage in my feet. I was just put on prednisone and gabapentin, so I hope I can feel better. I have been exhausted for over 2 years. Things just weren't right. my local doctor thought I just wasn't eating enough. I was so frustrated. tonight my feet burn and tingle, I can't sleep and I worry about my future. I applied for a job of my dreams in the place of my dreams before this diagnosis (knowing something was wrong) I am not sure if I would have the energy to do it.. and it may be too soon to take on something new and move 1400 miles. But I know people travel to Mayo from far away several times a year.. I feel that for my sister and I- our dreams just went down the tubes. We lost both parents in the last year and half as well plus our dog has cancer.We are both sad with having to deal with our illnesses, the loss of mom and dad and soon our precious Potter. We both thought that after mom and dad were gone, it would be our time to pursue dreams.. (we took care of our parents for 10 years)I hope that there is some light at the end of the tunnel and that we can be happy again and feel somewhat normal. Prayers appreciated.. since I can't sleep, I have been taking benedryl lately. hopefully that will kick in. Any suggestions on getting sleep? I couldn't sleep before taking prednisone and now it is really bad! I would appreciate encouragement from you all. Do any of you know of a support group which meets in person in Minnesota? I just joined this group as I am needing support. I live alone so I have a lot of time to think about stuff? Are any of you on antidepressants? thanks for any input and support.

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I also wish there was meeting in person groups. It would actually help much more. But for now we are here for you. I used to have sleeping problems too and the prednisone dose make it worse. Try to drink it early morning and not at night. And if you have to take at night then try nature meditation music to relax your mind and body. It seems to help as I was having vivid dreams when I did sleep. And it helps a bit. I did loose weight before the prednisone because of all the vomiting. Now I keep gaining since they gave me prednisone and I don’t even eat unhealthy so I don’t know why I’m gaining I mean I gained 10 kg in a month and before my weight was healthy at 68kg. And I’m mostly swollen up or my body is holding water back. This morning my kids woke me up at 8am and I’m so tired..after a having a bowl movement my whole body is shaking like I’m in shock and I’m nauseous. I have the same problem under my feet as you. And I get constant flare ups that becomes more painful everyday I do get that depression sometimes. But it’s good to not let the depression get hold of you in a bad way. Try staying positive do things you like to do that wouldn’t make you feel worse. You not alone. And my prayers with lots of love are with you and your sister.

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@janicebengtson

I will be your friend! I am much older than you, but feel your frustration and sadness about this diagnosis. I hope you have some family that will start to understand and really believe you have a serious illness. My brother was a total jerk to my sister saying she was crazy and just wasn't eating enough. She lost a lot of weight over 2 months. He still thinks her disease isn't a big deal. so we don't stay in contact with him. Ok I better go.. I need to go to work tomorrow and will put on a happy face while feeling exhausted, in pain etc. If people only knew how I really feel. I used to be in such great shape..hiking all over the mountains of the west, mountain biking etc. just feeling normal and now everything is an effort.. oh well. I hope your treatment really helps you and that you can take care of yourself and your little kids. I can't imagine having that responsibility and dealing with being sick. take care.

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@janicebengtson An interesting discussion, and it has triggered some thoughts. Well, or close. Anyway, First, "Mixed connective tissue disease" is a name that does not trigger much empathy or sympathy. It is functional, but not emotional at all. Like warmed-over Mac and Cheese. It needs a new name, like "Burnt River Tongue" or something. I don't think I have it so I do not know. Second, there is an old poem and I forget who wrote it. 'Aren't men assess who seldom make passes at girls who wear glasses?" Third, the form of Amyloidosis I have, Hereditary Gelsolin, is striking almost everyone in my immediate family. Thankfully it mostly does not hit full force before about age 80. But my brother refuses to admit the reality of it. "I am 70, and I don't have it, so I am not going to have it." I thought I did not have it, either, until I was 76. Turns out I have had it all my life, even showed signs and symptoms, but no one picked up on it from the beginning. Even fools can learn some day.

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Hi everyone. I have been having a very bad day..few days ago I almost felt like I was better I was able to do things. No it like my mind is telling me body to do things and my body is not responding..I have had no appetite whole day and the thought of eating make me feel nauseous. I wish I had someone living with me who would understand this mixed connective tissue disease and just cook for me. Because when I do manage to make food I’m so tired and I can even swallow it because it hurt sooo much that I can’t even explain the feeling. It’s like my throat just become to narrow or something and nothing goes in.. when I do manage to forse eating and flush it down with water with each bit.. well then few minutes later I gag it all out and I’m all empty again. What I don’t understand is how did I get from 68kg to 81kg sooo fast with all the vomiting and being sick. I cry of pain as the pain pills don’t help. My appointment for rheumatologist is only 14 November and till then I have to raise my kids feed them and my brothers wedding on 6 October where I have to travel for it. How will I fit in my clothes if I keep gaining and how will I feel and look with all the vomiting and pain and being so fatigued. I eat very healthy and no junk food. I also feel like I’m having some emotional break down. I have no support. My parents.. well I’m not even sure I can call them parents as my whole life they were mostly absent. They don’t even bother to find out how I’m doing. Instead they still try to take more from me.. my husband shame tries to help but he don’t know anything about this. And he is working all the time so we can have enough money for my doctors and meds. My kids are just to small for me to expect them to understand what is happening to their mommy. I have no friends or well I had one but when I was knocked down in bed full for few days and couldn’t make it to her kids birthday party and called her to tell her that I was diagnosed with mixed connective tissue disease so I’m to sick. Then she stopped talking to me.. wow what a friend. I really hope to make a friend here who is going thru the same as me. Because even thou I can’t help myself or others much I’m a good listener and I try to give my best advice.

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@liyana

Hi everyone. I have been having a very bad day..few days ago I almost felt like I was better I was able to do things. No it like my mind is telling me body to do things and my body is not responding..I have had no appetite whole day and the thought of eating make me feel nauseous. I wish I had someone living with me who would understand this mixed connective tissue disease and just cook for me. Because when I do manage to make food I’m so tired and I can even swallow it because it hurt sooo much that I can’t even explain the feeling. It’s like my throat just become to narrow or something and nothing goes in.. when I do manage to forse eating and flush it down with water with each bit.. well then few minutes later I gag it all out and I’m all empty again. What I don’t understand is how did I get from 68kg to 81kg sooo fast with all the vomiting and being sick. I cry of pain as the pain pills don’t help. My appointment for rheumatologist is only 14 November and till then I have to raise my kids feed them and my brothers wedding on 6 October where I have to travel for it. How will I fit in my clothes if I keep gaining and how will I feel and look with all the vomiting and pain and being so fatigued. I eat very healthy and no junk food. I also feel like I’m having some emotional break down. I have no support. My parents.. well I’m not even sure I can call them parents as my whole life they were mostly absent. They don’t even bother to find out how I’m doing. Instead they still try to take more from me.. my husband shame tries to help but he don’t know anything about this. And he is working all the time so we can have enough money for my doctors and meds. My kids are just to small for me to expect them to understand what is happening to their mommy. I have no friends or well I had one but when I was knocked down in bed full for few days and couldn’t make it to her kids birthday party and called her to tell her that I was diagnosed with mixed connective tissue disease so I’m to sick. Then she stopped talking to me.. wow what a friend. I really hope to make a friend here who is going thru the same as me. Because even thou I can’t help myself or others much I’m a good listener and I try to give my best advice.

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Oh @liyana! I'm so sorry to hear about all that you're going through. Managing a condition like MCTD is a tough journey, but I want you to know that you don’t have to do it alone. It’s horrible to feel frightened and alone. But I sure like your attitude of trying to figure things out and also listen to others. Often, that is all one needs – to be heard and to be acknowledged – to feel better.

While you wait to see your doctor on Nov. 14th, would you consider seeing a counselor or a therapist? I'm glad you're part of this group; please know that you're in a good place to get the support you need.

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