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Liyana Ahamad
@liyana

Posts: 16
Joined: Aug 05, 2018

Mixed connective tissue disease

Posted by @liyana, Sun, Sep 2 5:36am

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.

REPLY

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.

Liked by Dee, Liyana Ahamad

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

Here we go….Freedom of Speech has hit the Mayo Clinic chat…

Liked by Liyana Ahamad

@oregongirl

Here we go….Freedom of Speech has hit the Mayo Clinic chat…

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Hi @oregongirl — may I ask what prompted your comment? Yes, Mayo Clinic Connect has Community Guidelines which have nothing to do with limiting or infringing freedom of speech. There is a link to them at the bottom of every Connect page under Mayo Clinic Connect. Have you read them?

https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/

The reason I ask is that the whole purpose of Connect is to provide a safe place where patients can ask questions and learn what other patients with similar health issues are doing for treatments. The emphasis here is protecting each other and keeping Connect a safe place where there is no fear to ask a question and share information.

Hoping you find some answers also…

John

I wrote a short response to a new member. I shared with her my inability to get relief etc..someone took it on themselg to cut my message as I had said it before. Well maybe this new person needed to hear it. That's it.

@oregongirl

I wrote a short response to a new member. I shared with her my inability to get relief etc..someone took it on themselg to cut my message as I had said it before. Well maybe this new person needed to hear it. That's it.

Jump to this post

Thank you so much for some honesty.. and not that blah blah that people spin us to say it’s not so bad it will be all good. I appreciate straight forward and honesty. You sound like a awesome person. If there was a way I could have post you some cannabis I would. I really does take pain away

@johnbishop

Hi @oregongirl — may I ask what prompted your comment? Yes, Mayo Clinic Connect has Community Guidelines which have nothing to do with limiting or infringing freedom of speech. There is a link to them at the bottom of every Connect page under Mayo Clinic Connect. Have you read them?

https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/

The reason I ask is that the whole purpose of Connect is to provide a safe place where patients can ask questions and learn what other patients with similar health issues are doing for treatments. The emphasis here is protecting each other and keeping Connect a safe place where there is no fear to ask a question and share information.

Hoping you find some answers also…

John

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Thanks uncle John for your consurn but it’s all good.. I like to hear different opinions.

@liyana

Thanks uncle John for your consurn but it’s all good.. I like to hear different opinions.

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Welcome @liyana.

As Mentor @johnbishop rightfully suggested, I would have merged your message into the larger discussion about MCTD; unfortunately, due to technical issues I'm unable to do that right now. As Connect moderators and mentors, we sometimes move individual posts to an active discussion, especially when it would be beneficial for a new member (such as yourself ) to connect with other members who are talking about similar experiences. In fact, you put it so well in your message above, "I like to hear different opinions."

In the meantime, I'd sincerely encourage you click on the link that @johnbishop posted, https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/ and view the incredibly informative conversation taking place about MCTD.

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.

Liked by Dee, Liyana Ahamad

@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)

@oregongirl

Here we go….Freedom of Speech has hit the Mayo Clinic chat…

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Hi @oregongirl, It appears you have a concern about your post being edited by the moderating staff. I assure that this is not the case. Your post can be seen here: https://connect.mayoclinic.org/discussion/mixed-connective-tissue-disease-1/?pg=1#comment-122648

As @johnbishop mentioned, we do not edit or delete posts without warning or due cause. Posts that violate the Terms of Use (https://connect.mayoclinic.org/terms-of-use/) and threaten the safety of the members will be removed and a message posted to the community explaining our actions.

Your posts are informative and supportive. As a long-standing and active member of the community, we would contact you by private message if there were ever any reason that a post was in question. I am sending you a private message now to discuss further or to get further clarification from you if I am misunderstanding the situation that alarmed you. Thus we can leave the MCTD discussion to return to conversation about MCTD.

Not one person warned me or called or wrote to remove the post. I would never write anything inappropriate. I am a Christian

@oregongirl

Here we go….Freedom of Speech has hit the Mayo Clinic chat…

Jump to this post

Hi @oregongirl,

As this group's moderator, I wanted to reach out to you and thank you for your participation on Connect. I'm so happy to see that you have found many different discussions to partake in, and have offered information, encouragement and support to other members on Connect.

I see from your message above that you are upset, so I also wanted to reassure you that we would not delete or even edit a member's post unless it violates any community guidelines. However, I can imagine your frustration – I'd be irritated too!
After digging a bit deeper into the issue, I believe the auto filter (for messages/posts) is to blame – possibly a misjudgement in this case.
When we post messages and/or edit it multiple times, it may get identified as spam by our auto filters; most likely, that's what happened with your post. I recall reading somewhere that "The attention span of a computer is only as long as its power cord!!"

I hope the explanation helps allay your concerns, and I sincerely look forward to seeing you back in this discussion and elsewhere on Connect.

@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?

@kanaazpereira

Hi @oregongirl,

As this group's moderator, I wanted to reach out to you and thank you for your participation on Connect. I'm so happy to see that you have found many different discussions to partake in, and have offered information, encouragement and support to other members on Connect.

I see from your message above that you are upset, so I also wanted to reassure you that we would not delete or even edit a member's post unless it violates any community guidelines. However, I can imagine your frustration – I'd be irritated too!
After digging a bit deeper into the issue, I believe the auto filter (for messages/posts) is to blame – possibly a misjudgement in this case.
When we post messages and/or edit it multiple times, it may get identified as spam by our auto filters; most likely, that's what happened with your post. I recall reading somewhere that "The attention span of a computer is only as long as its power cord!!"

I hope the explanation helps allay your concerns, and I sincerely look forward to seeing you back in this discussion and elsewhere on Connect.

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Do you mind sending your personal issues about my friend’s message private. I liked her honesty and opinion. What I don’t need is this discussion inbetween my responses from others. And I do feel on a more personal note. That Oregongirl also deserves two be spoken too in private conversation as too why het opinions was edited. Please have some respect for the elderly

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