How MCTD has made me feel like a 14 year old boy

December 15, 2013

A couple of weeks ago, I was having a conversation and out of nowhere, my voice cracked. It squeaked. It reminded me of high-school when the boys voices all started breaking and we all politely ignored it but noticed it all the same.

The first couple of times I laughed and said ‘What was that!?’ but now it’s been happening more regularly. As in a few times a day. There is no sign. I don’t have a sore throat. My voice is not hoarse – I know that that is a common MCTD symptom – it just keeps giving out.

I am very interested to hear from anyone else with MCTD, lupus or any of the related illnesses about whether you’ve had this symptom before. Of course I’ve been googling but it’s not showing up as a regular MCTD symptom.

However – as those of us with this delightful disease know, medical sites hardly delve into the reality of what it is like living with this and the plethora of effects it has on our bodies. Forums and blogs are, far and away, the most honest representation of what we are going through.

There is no way a doctor can understand this illness without listening and observing many of us who suffer with this and maybe one day, those websites that give us that tiny list of symptoms will expand and make us feel less alone as each new symptom rears its ugly head.

I’m sick of wondering if everything that happens to me is MCTD related or something different that I should be concerned about.

So I will ask my rheumatologist if he has heard of this before and no doubt he’ll tell me to keep an eye on it and then if it gets really bad I will be put in for copious amount of tests that will confirm that it likely is a part of the illness, but noone can really be sure.

So! Let’s avoid this and if you’ve had this – write to me and hopefully if someone searches MCTD and voice cracking, they will come across this and know they are not alone.

It’s all we can really do.

XX

20/4/14 Just wanted to update on this as it has been ongoing and my rheumy said he did not believe it was part of my MCTD and sent me to see an Ears Nose Throat specialist. After a particularly uncomfortable appointment which involved a long thin camera up my nose and down my throat, the doc said he believes it’s a cyst on my throat that will need to be removed. It is not related to my MCTD. I thought I had better update this so others are aware of how this worked out. – Naomi

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13 Responses to “How MCTD has made me feel like a 14 year old boy”

  1. Bev said

    guess since the vocal chords are ligaments = collagen, then you must be experiencing some auto-attack which is inflaming/thickening them? before it settles back down you could do a bit of yodelling on the side? aim for ‘the voice” p’raps? i could do backing when i have the husky voicebox? something to think of to take advantage of the hand dealt? oh well, meantime – keep laughing at every opportunity….. best medicine and suchlike….. :o)

  2. sophie said

    If this turns out to be a double post sorry! I had a computer hiccup right as I was finishing this…
    Anyway, what you are describing is a fairly common symptom of RA (which of course is a component of MCTD). It is called Cricoarytenoid Arthritis. There is a great article on Cricoarytenoid Arthritis done by the RA Warrior. Just google RA Warrior Cricoarytenoid Arthritis. It should pull up a 2 part blog / article. Good luck!

  3. judy gillespie said

    Well I have MCTD and I do a lot of research.Never heard of the voice cracking but seems this disease affects the whole body.Seems I have something different everyday. My doc says you just have to learn to live with it. And its like “that this pill see you in 4 months” I have stopped finding any humor in all this. Sorry for the negativity but I do wish you well !

  4. Marleen said

    yep, I know the symptom. It has stopped since I’ve got my Enbrel injections, as all the RA symptoms, so what sophie said couls/will be correct.

    Marleen

  5. I’ve been hoarse for years, and was told it was due to my sarcoidosis; my rheumatologist never mentioned it as having any relationship at all to my MCTD. I’ve just discovered this blog and I am literally crying tears of joy because I don’t feel alone in this anymore.
    Is anyone willing to answer some regimen questions for me? I don’t feel confident in my provider and I’m having a hard time finding a new one.

  6. Hi! My name’s Sara and I’m a 18 year old who’s about to enter into her sophomore year of college. I have many hopes for my future and I refuse to not be able to pursue them (such as going to medical school). I’ve been struggling for the past semester with the constant aches and never feeling well. A few weeks ago during my finals I got my first “flare” where my fingers got super swollen and my index finger felt like it was broken. My wrist felt sprained as well. I got my tests back and I have MCTD. It’s a lot to hear in the past week especially being so young. I want to fight it and get my life on track. Everyone’s different! I have a bad case of Raynaud’s but it’s not that bad besides the aches in my joints. I’ve changed my diet and went on a whole foods run! If there’s any way, could you guide me? I don’t know what to expect. I love your optimism and it’s truly inspiring that I can live my life. They’ve put me on Prednisone right now which is doing an okay job and they want me to start Plaquenil. Any experience with the latter? Any tips or words of encouragement? I feel so depressed lately because I am otherwise a healthy 18 year old and I make good grades so I kind of feel like I have a death sentence on me. I know I shouldn’t think like that but I think hearing from another MCTD victim would help! I’m willing to talk via e-mail as well! Or Facebook? Anything would help!! Thank you so much!!

    PS- My voice does that too! I always just thought it was because of the acid reflux that messes with the larynx.

    • Hi Sara. Thanks for your lovely words and I’m sorry you have MCTD…that sux. A few things have come to mind….this is not a death sentence. You have excellent chances of living a long happy and reasonable life. You will adjust to chronic pain and even forget what it was like to be pain free. Sounds bad but is good. Also, lets not use the word victim ( and I know I have on here) I only thought last night….Im not a victim! Unlucky yes but thats all. It is so important to keep positive. I know a number of people with different chronic illnesses and those with a positive outlook have much happier lives. Thats not to say I don’t have massive breakdowns every couple of months but I cry and then I move on. I work full time in PR, I travel regularly with work and this year Ive started going to the gym a few times a week. Its taken time but I live a normal life. We just handle pain and life’s challenges better than others. Take this time soon after diagnosis to mourn the healthy you but don’t think life is over and don’t think you won’t be truly happy and successful coz you can be. Naomi

    • Oh also. I started on 5mg prednisone (which is a low dose) was on for years. Was hard to wean off it but it saved me in the beginning. Yes on plaquenil now and methotrexate as well as anti inflammatories. Get off prednisone when you can with your doctors advice but don’t beat yourself up about the fact that you are on it and ppl will tell you its so bad for you etc…well lets see them deal with the pain before plaquenil kicks in. also if it controls extra damage to your body at the beginning then its better than not being on it. Trust your gut feeling and do your research too but take opinions with a grain of salt…mine included!

  7. luce said

    Hi, I, too, have a cyst on my vocal cord and had similar voice issues as well as being short of breath and/or my voice doesn’t have any stamina. I’m progressing with a prolonged illness and MCTD diagnosis. With this illness, my voice has been hoarse for months, unlike other times where it can come and go. In addition to looking at the cyst, the Otolaryngologist and Laryngologist (been a shared patient between them and the ENT) also looked into my larynx and found that my problems were extending from laryngeal atrophy as part of the scleroderma-side of MCTD. So, unlike some of the others, I would say that the voice issues may have things to do with MCTD in certain circumstances, and that is also, especially, true if you have GERD, because the acid can back wash that upper throat and voice box area and negatively affect your voice. Have you had the surgery, yet? I hope it went well, if you have had it. If not, maybe see if they will scope you further into your larynx and see if that maybe adding to your problems? Best of luck!

  8. Tabitha said

    Having only been diagnosed with MCTD this year I’m glad to know I’m not the only person who is constantly wondering if something happening to me is MCTD related or not. I seriously feel as though I’m going mad sometimes! And you are so right, no website that I’ve found really explains MCTD well at all. Thanks for sharing

  9. Jerome said

    Hi
    I have MCTD and had a cyst too. Few weeks later it has disappeared again. I think now, it was stomach acid coming up and touching my vocal cord.
    When you have MCTD, probably your stomach doesn’t close of quite so good anymore, causing acid coming up every now and then. It may cause inflammations fo the oesophagus, but can also reach your vocal cord.

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