Dysarthria: How Does MG Affect Your Speech?

[Rick Federmann]

Speech difficulties have been a constant.  In my case, it is manifested as hesitancy and struggling to get the words out.  Regardless of activities, medications or dosage levels, the frequency and difficulties remain unchanged.  Typically it occurs when I’m tired or stressed, and sometimes just because of MG randomness.  I’ve learned to instantly recognize when it starts to happen, and I focus on pronouncing the words and speak more slowly.  With practice, I am now able to react quickly and people do not notice when I am experiencing speech difficulty.

 

 

[Jodi Enders]

I will have to try talking slower to help control this! I also experience difficulty getting words out when stressed or when I’m excited and speaking a lot.

[Michelle]

That is exactly how it affects me, rarely I get hoarseness if I talk to much, but usually it shows itself by an almost stuttering or difficulty getting words out. But if you read the literature it never refers to this symptom in relationship to MG. And it the same for me, happens when I am tired, stressed etc.

[Tina]

I’ve had it for years, mostly articulation and slurred speech when I’m tired, stressed,  frustrated or hungry. Now I have it more frequently since I’m a senior and have Parkinsons too. Such a gift. I just remove myself from the situation if I can and decompress, or limit my speech and responses.

[Stanley Martin]

My speech sounds like I’ve had a few drinks and my tongue gets very sick when I know I need my Mestanon period. I’m now taking Pyridostigmine two tablets, 60 mg three times a day and Azathioprine 2 1/2 tab 50 mg daily

i was getting IVIG infusions monthly but at $8,000 per infusion I could no longer afford them.

so now I just get along and learn to slow down when speaking and try to control my emotions

very difficult but God has plans for me

[Heather Kaye]

I have generalizes MG and for a decade I have been reasonably well controlled with the usual meds.Over the last couple of months I have developed what I can only describe as a hesitancy and stumbling over words.TBH I am finding this quite frightening.

My neuro has retired and I am still waiting to be assigned to another list.Face to Face appointments with my GP are none existent and right now  a phone appointment is not an option as  making myself understood is so very difficult. What on earth can I do ?

Any words of wisdom will be greatly appreciated

[Kathy]

<p style=”text-align: left;”>I have dysarthria when I’m tired, stressed and if I talk too much. I wear a personal amp system if I am in a group.  I keep the microphone close to my lips and speak very quietly.
If my slurring is really bad it helps if I use my hands to press back on my checks and jaw when I speak.</p>

[Anne H]

Hi Heather I  too was diagnosed over a decade ago and until just recently, like within the last month have been having difficulty with my speech. I wish I had words of wisdom for you but I too am confused and scared.

[Heather Kaye]

I am in despair at ever seeing a neurologist ever again. I know it sounds contrary , but I am praying that my speech difficulties are  Mg in origin. The thought that something else such as dementia may be going on is too frightening for words.I feel its pointless contacting my GP as a phone appt is not an option with speech difficulties and the chance of F to F is none existent. My GP has no experience with MG and always tells me that I need to speak to a neurologist. In my case this is a neurologist that does not exist ! Sorry for ranting. I am beyond frustrated

[Alice Zeleney]

Thank you for sharing that. I will pass that info onto him. He has days when his speech is slurred also. Thank you

[Paul Lull]

My Dysarthia occurs when I eat something really chewy or talk for an extended period of time 15 to 20 minutes. An example of something chewy would be a bagel. I’ve also found that eating ice cream triggers it as well.

[MikeS]

Originally I only had ocular MG. But subsequently all my flare-ups include dysarthria (plus other bulbar-type MG symptoms). It usually starts (if I haven’t talked for a while) after a few sentences. It manifests for me only as slurred speech. If someone isn’t familiar with me, either in-person or on the phone, I always let them know upfront to expect slurring (or explain why I’m already slurring). I try to remember to slow down when pronouncing a word with an “s” as this is the most difficult type of word for me to say. I never let it bother me and nearly everyone else seems understanding and not bothered at all by it. Occasionally I’ll mention that I’m not drunk if I think they might think I am (usually it’s good for a laugh). When I’m in remission the first thing I always do when I wake up in the morning is to say, “She sells sea shells down by the seashore” several times as a check.

[George Tvardy]

Slurred speech is a major symptom for me when I’m near the end of the effectiveness of a round of Vyvgart treatments.  This is combined with major mouth weakness and difficulties with swallowing and chewing.  When these symptoms surface, I know that it’s time for another series of Vyvgart treatments.

To compound things, I am a Children and Youth therapist who works in a community mental health center.  My job IS  talking.  When I had my initial onset of symptoms in 2020 and before I started IViG treatments at that time, I was very fearful that I would no longer be able to do the job that I loved doing for 30 years.

Praise God that IViG treatments, and then Vyvgart, has helped to stabilize me.  I’m fortunate that if my slurring starts, it’s usually clears up with rest and then my speech turns completely back to normal when I start Vyvgart.  If I am slurring a lot, usually I explain my MG symptoms to my patients, do shorter therapy sessions and rest my voice as much as possible. Thankfully most of my patients are very understanding.

[Mark Harrington]

Interesting to hear your comment about “s.”  My only speech difficulty is with “s.”  When I am nearing my next Vyvgart cycle, dysarthria becomes a pretty noticeable issue.  Most days it is after dinner, or thereabouts, that I have difficulties.  Best of luck.

[paul spychalski]

I know what I want to say but can’t get it out! Slured speech, sometimes sounding like an alien. This could happen at any time but usually whenever I’m tired. Just taking Pyridostigmine at this time.

 

[Claire M Walsh]

Dysarthria was my very first symptom. I’ve had MG almost 3 years now. For the first year and 1/2 I survived on IVIg and had very little slurring after I was stabilized with that, Mestinon and Prednisone. This past year I’ve been on just Vyvgart and Mestinon…but my dysarthria is more often and more pronounced. I also can’t find the right word sometimes, my speech is slurred and when I eat, food collects in my lower cheeks. Someone else mentioned how scary this is, and I agree! Vyvgart only holds me for about 6 weeks now. I feel like I’m going backwards. I am lucky that I do have a neurologist who specializes in MG, and I intend to talk to her about this in my next appointment.

I am so sorry that some of you do not have access to a Neurologist. Please try and find one who knows MG if at all possible. Good luck to all.

 

[Richard Marquard]

Great subject. Also interesting for me to note that when we share the same symptom, the effect is slightly different and the severity as well. Must be our different dna and or immune systems).

I am presently in remission( I believe) and my dysthewria is only noticeably to me—- tinny sounding and must speak softer to control. Is always there but feels stronger when stressed or in any any emotional situation. I set my mind to start sentence over, softer, over enunciate and control pace.

Hope this helps others. We are all in this together and when we find the individual solution to our own symptoms we will overcome( I pray)