Is This A Scary New MS Symptom?
Is this a scary new MS symptom, or what?
Assuming you’ve already been diagnosed, there are days when you may find your body doing something bodies aren’t supposed to do, and you know that you’re likely experiencing a new MS symptom. Wonky vision, weak knees, and sketchy bladders, are all classic MS symptoms. But MS is a complicated mother fucker and sometimes it’s not so cut and dried. More than once, I’ve had to remind myself that not everything is MS. It’s just that 9 times out of 10, it is MS. When you have a disease that affects the central nervous system, just about anything can go haywire.
Even worse than wondering if a new health issue is an MS symptom, is when on some level, you know it’s MS, but your doctor doesn’t necessarily agree. When I showed up in Emerg with my very first MS attack, I was told I had optic neuritis. My sudden hearing loss was dismissed. Because “hearing loss isn’t a symptom of MS”.
I’m sorry, what? I couldn’t hear you because I’m deaf in one ear.
Like white peacocks, or Starbucks getting my name right; just because something is rare, doesn’t mean it isn’t real. My head explodes just remembering my first taste of the medical gaslighting that sometimes comes with chronic illness. Sadly, certain experts would rather tell you nothing’s happening than admit they don’t know what to do about it.
Which brings me to my most recent, new, and confusing (possible) MS symptom: I’ve been losing my voice. It’s sometimes difficult to talk, it’s hard to cough, and my speech gets fatigued the same way my legs do. It’s not a sexy ScarJo rasp. No. That’s not how MS plays. I sound more like Marge’s mom on The Simpsons. Though not unheard of, vocal issues aren’t a tell-tale MS symptom, so it begs the question of whether or not my hoarseness is caused by MS, or what. In my mind, of course it’s an MS symptom, because wtf else could it be?
Okay, it could be other things, and I’m grateful to have a doctor (now) who takes me seriously, and will get to the bottom of this. In the meantime, I’ll try not to obsess over what a future without talking looks like. I mean, The Banker and I have a strong marital ESP game, but it’s limited to looks that mean “Save me, I don’t know this dude’s name”, “We hate her, right?”, and “Even though I asked you not to buy chips, if you eat the rest of the chips we will have a problem”.
Thanks to COVID, mask-wearing doesn’t even allow for a friendly smile or (more likely a cautionary RBF) anymore; and without words, I’m basically left with eye rolls and raised brows for casual communication, and I’ve got so much more to talk about. Like, “we hate her”, is enough said at the party, but clearly we need to dig into this more in the car-ride home.
I don’t just use my voice for gossip and complaining either. Lately I’ve been covering the French portion of my niece’s COVID-induced homeschooling, I’ve been a guest on a few podcasts, and I even used to sing until MS decided otherwise.
There are no ‘good’ MS symptoms. They all suck, and sometimes it feels like whichever symptom is the loudest is the one I’ve decided is the worst on any given day – or any given moment. When nerve pain keeps me up at night, that’s my worst symptom. When I take something to help the pain, but it makes my legs too weak to walk the next day, my paralysis is the worst thing I’ve got going on. When I need a bathroom, and there’s none in sight, well, you get the picture.
But in the hierarchy of MS symptoms, new ones feel especially troubling–a chilling reminder that my pact with Satan must be set to expire because MS is still lurking, trying to fuck shit up. It’s hard work building the kind of mental resilience required to process and accept so many disabling symptoms. When you wake up with a new problem, wondering what fresh hell this is, you realize that with MS the work is never done.
So, now we wait. I’m being sent for tests; and in the meantime, my Ocrevus start date gets pushed back. Again. Because it doesn’t make sense to suppress my immune system and then send me into the hospital during a pandemic for diagnostics.
Whatever’s going on, I’ll cope with it. I always do. I think MS is at its worst when it erodes the things that are fundamental to our identities. How many times will I be forced to slap on a smile, pivot, and reinvent?
As many times as it takes, I guess.
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It sounds like dysarthria which is not an uncommon in MS. I have difficulty controlling my tone and speaking loudly enough.
I always say that MS goes after what you value the most. My big exacerbation over 10 years ago caused aphasia and cognitive/word organization issues. I’m a librarian by training and was all about the relationships between words etc. All gone.
I always valued being smart the most and now I’m not as smart. I have been mostly spared mobility issues for now and think to myself “I would rather lose mobility than my brain” but once I start losing mobility I’m sure I’ll feel differently.
Hopefully your voice returns. I love your blog.
Hi Denise. Asking about the aphasia and cognitive/word thing. I have the same problems, but what I find funny is I can often write what I want to say even if I can’t speak the words. I know it’s a different pathway in the brain, but people tend not to believe me when I cannot come up with words, but can write like your old grammar teacher. It’s so frustrating. I’ve had this disease for over 40 years so it should not surprise me anymore, but it does..daily.
Wow
So interesting.
Hi Joann. That’s very interesting and it must be so frustrating for you.
With mine I couldn’t create language for about a week or so and as I started to recover it was so fascinating to me. I could say the word “she” even if it was written down and I was reading a basic sentence aloud.
Later on when I was more fluent, I started mixing my opposites up (like I was hot but I would say I’m cold).
The brain is a remarkable thing.
Joann I have the exact same thing. Can’t find the words with speech, no problem with writing. Interestingly, after a vodka martini I can think straight again and speak eloquently. But just one. I feel pretty deep and enlightened for about an hour, then it’s time for bed.
When I was in the hospital a couple years back for no reason I lost my voice for a few weeks I couldn’t get any word out bad enough I already have a hearing problem. Once I got out I had problems coughing like I use to still do at times but but here with this monster nothing surprises me.
Hi thanks for the info on ocerves , been on Avonix for 20 years Sern my Nuro last week and again we focused on side effects. He gave me some interesting reading material on it. I seen the lower immune system and I get action with vaccines. So I’m going to wait till they get the COVID shit fixed. Think I want the COVID shot first. Good Luck Young Lady.
I have had this as well. I have been told I am very loud on the best of days, but over the last 6 months or so, my voice gets raspy in the middle of a sentence. I haven’t lost it totally, but I stop trying to talk when this happens so maybe the rest helps. Please let me know what the doc tells you, as I am between doctors since I moved from Toronto to London. Best of luck always!!
I will keep you guys posted. I hope you find a good doc in London.
I have also experienced a “squawk” coming from my mouth at times. Mostly went I’m tired (like I’m ever NOT tired ?). I find when I speak loudly it goes away or as noticeable , so my husband & kids often tell me to stop yelling ??♀️ and lower my voice ?. Whispering or speaking softly sounds like croaking frogs somedays.
I think it’s an MS thing ?♀️
My back is so bad that yesterday morning i was dragging my leg round with me, makes me want to scream but theres not alot of point is there!!!! Thanks for posting this as i it makes all my little annoying things of m.s seem more normal!!!!
Never underestimate the power of an occasional scream! I think it’s important to periodically grieve what we’re going through. It helps us get on with it.
When I was first diagnosed a year ago, I did a little primal scream therapy when I was home alone. It’s remarkably freeing! Just make sure the windows are closed when you do it so a passerby doesn’t call 911.
Thank you I enjoy your posts, blog etc;
I have MS diagnosed in 2019
You are right on the money! I enjoy reading whatever you have to say… thank you for being you❤️
Hi,
MS has not affected my voice but it definitely has impacted my speech in a past relapse. I would be in the middle of a sentence and then everything would stop…my mouth would stop moving and I couldn’t make a sound. Thankfully, once I recovered from the relapse, it was not a lingering symptom.
I have heard of others with MS who have had a similar vocal experience like what you describe. I hope your doctor can provide insight for you.
Side note, I had a run with thyroiditis in 2019. My thyroid was enlarged enough to press on my vocal cords and I sounded like I had been smoking a pack of cigarettes a day for thirty years. Interestingly, I took radioactive iodine 25 years ago to destroy my overactive thyroid so wasn’t watching for this. But…the lemtrada treatment I did in 2017 and 2018 still found a tiny portion of my thyroid to latch onto and add to my long list of medical fun.
Health and happiness,
Karen
This happens to me pretty frequently. Slurring too. Don’t have to be tired to use the wrong word.
Andrade thanks again for hitting my nail right in my head. One week ago, because it was early in the morning and warm, my legs were weak and I fell getting into my husband’s truck. My left foot was on the running board and it shot off with so much strength and velocity the heal hit the shin of my right leg with such force it opened up my leg. 2 ambulance rides later, with the large flap of skin held back in place with staples I’ve got a huge wound to favor on my right shin. My sister calls it my “calzone”, it’s a gross black wound that must be cleaned and dressed daily. Further, I have to keep my right leg raised which throws my, already out of alignment, body out of alignment. This looks to take approximately 3 weeks to heal. But now add in the MS. I’m at the end of week one. Thank God for physical therapy. It’s the only thing keeping my body sane. The weakness now in my left leg is making me far less mobile than I need to be! That’s where PT comes in! But the trauma to my system and my body has to be dealt with too. I don’t walk and chew gum, therefore it takes a few days of rest and rehab to realize resting is NOT in the cards. As with all things MS it’s ALWAYS about the MS because it won’t take a back seat in your body! Ever!!! I’m finding after 18 years diagnosed, it’s always about the MS! Unfortunately it’s taken me 17 years to get here! For my own sanity I’m learning it’s always about the MS. Once you put that first you can work on the rest. Trying to positive image myself must begin there. My physical maintenance MUST begin there in order for me to maintain any sense of self-esteem. Reading your Blog is an amazing indulgence I insist on taking the time for every day!! Thank you my Friend!??
Oh dear. Slow down and stay safe! I fell face first into the microwave last night but what you did sounds way, way worse. Thanks for reading and no more accidents!
I haven’t lost my voice as in like laryngitis, but MS has left my voice weaker, and sometimes it feels like words are hard to form properly–almost like the lips and diaphragm are weakened (which I suppose makes sense). I spent several decades in radio and community theatre, so projecting and clear diction were important. Now, I avoid talking most of the time. I live alone, work from home mainly online, and the cat isn’t much of a conversationalist, so it works out.
My stepmother has had MS much longer and is bedridden. She can barely speak above a whisper, so I wasn’t that surprised at my speaking issues.
Ardra, sadly my autocorrect on iPhone is ALWAYS functioning. Just got to jog my brain to always check! ?Sorry my Friend!
The world will be a sadder place if you lose your beautiful voice. Our family is honoured to have heard you sing many times and we all have so many wonderful memories of your voice! XO
I just wanted to say that I am sorry you are experiencing this symptom regardless the cause. I can’t imagine the frustration you are experiencing as you always have so much to say and share – and it’s a lifeline to those of us that follow you.
The FB live event this past week was great and texting worked really well showing pictures and links
Thanks so much for following and for your feedback on the group chat! There’s another one this Wednesday!
I flat out had to scream to get any sound out for about 2 months. The MS nurse told me it is a symptom. I also found out that I have weird allergy symptoms (post nasal drip) that makes me squawk and gag. Combined they couldn’t say what I had at first. We finally figured it out. Spray for the sinuses and singing(comes from a different part of the body) to strengthen my speach. It worked! My friend with ms cant speak where you csn understand him, but has a lovely singing voice. Huh, go figure! Good luck?
Hope this new symptom is not related and minor. Thank you for putting yourself out there. Your web site has been extremely helpful. I just had a bladder test- talk about humiliation. I won’t give the details as I’m sure you know. Then the 20 something tech says oh don’t be embarrassed I’ve done hundreds of these. Really? You started when you were 15? I feel so much better. Can you dim the over head lights?
Thank again, take care.
Sounds like you had a urodynamics test. I hated that one too. Like, I’d rather have a spinal tap.
Omg urodynamics! Ardra you are so right about the spinal tap being preferable. Horrible. Just horrible.
Guys/gals, this is really helpful. For one, I’m surprised to hear you’d prefer a lumbar picture to the urodynamics. Hope I don’t experience that for a good long time, because I thought the lumbar puncture was the worst!
I’ll say that I don’t seem to have vocal issues (yet?) but definitely experience losing words, people’s names – people i just talked to, used their name, and have known for years – and random other expressions. Lots of times I’m able to sound out something closer, or use substitutes (e.g. small hand shovel = “trowel”).
I do love your blog, Ardra, keep writing and thank you 🙂
Hi,
During the five years it took me to get a diagnosis, I lost my voice during the evenings and when I was very tired. My neurologist at the time sent me to an ENT and they tested my vocal chords and discovered one of them was paralyzed. Fast forward to 2012 when I received the MS diagnosis at a MS clinic and told my now neurologist about the vocal chord paralysis. His response was, “And they still didn’t diagnose you with MS?”
Wow. How exasperating. That’s 5 years you could have been on a therapy.
Sounds like an another BS, MS thing. Look how much it effected Thelma Bare, think that is her name. MS loves taking swings at us, especially when we think we have it under control. U will figure it out. ???
Hi, I thought of Selma Blair as well, when the speech symptom was mentioned . I didn’t realize it was a symptom until I saw her interview with Robin Roberts. As for speaking too loud, my kids tell me often to stop talking so loud. Stay safe❤️
I have recently started having issues with my voice as well. The only way to describe it is to say my voice doesn’t sound like me when I talk. I my voice sounds weaker, raspy and a bit hoarse. My husband doesn’t notice any difference but to me I don’t sound like me.
This sounds similar, tho my husband does notice. He also thinks my breathing has gotten shallower.
I lost my voice for several weeks a couple of years ago, and like you worried it was MS. I was traveling so it took me about 4 weeks before I eventually I went to my doctor, who referred me to ENT. The ENT put a scope up my nose to look into my throat and diagnosed laryngitis. He told me to come back in another three weeks if it didn’t clear up by itself. By the time of my follow-up appointment my voice was back to normal. Like everything else, it might be MS or it might not…
I have had Dysarthia https://en.wikipedia.org/wiki/Dysarthria much like Selma B. It went away on it’s own 90%, except when overly stressed. Hearing not so much. It is all connected to our brain tho.
I’m happy to hear you’re starting Ocrevus. I just had my 6th in fusion, and I’m walking! Balance is back, drop foot is gone, fatigue is gone. I feel like a miracle cuz we’re not suppose to get better! Text me if you want more info- I’ve had MS for 37 years, been on most every med., mobility left about 7 years ago, went to cane, forearm crutches, walker, and finally a wheelchair for long distances. I can walk independently now for short distances, otherwise with a cane.
I wish the same for you! 360-621-6141, if you want to text! ~Lindy. ??????
This is a stunning amount of success on this drug. I don’t dare let myself hope for results like this. Wow. I’m so happy for you.
I was on Ocrevus blind trial, I knew I was on the sucre pill and I told my dr and nurse just that.. I was told that no one knew which they had the real or the placebo but I knew because nothing felt different. Now I’m on the real stuff, not sure I feel or act differently (if you know what I mean) but there is always hope right! My thinking, my words, my speech, my drop foot and my bladder are all still shit..but it can always be worse….aww yes tired always so tired so disappointing
Lindy, after which infusion did you notice these improvements? Was it from the beginning of your Ocrevus treatment or after one of the infusions? I’ve had MS for 32 years and started Ocrevus last October after having been on rebif for about 18 years. After my second infusion in March, my husband and I both noticed worsening of spasticity and no improvements with other symptoms, i.e., left-side things like foot drop, hip flexion, hyperextended knee, arm, hand, bladder issues, bad spasticity. Use a rollator in the house swinging stiff leg around, and a wheelchair for anywhere else. Now I have spastic groin muscles. I was considering quitting after my 3rd infusion in September if no improvement, thinking since I’m an MS long-timer, none of the meds will work. You’re giving me hope!
Well said. I completely get it. Just had my Ocrevus infusion Friday. I blame all on my MS too, and I don’t call these things flares either. They are major annoyances that interfere with life and, like you said, cause us to reinvent ourselves once again. Please stay strong, hang in there, and find joy where ever you can.
My voice has changed drastically! Sometimes I don’t even have a voice! When I do have a voice, it is almost like laryngitis, along with loss of my ability to recall the correct word I want to say. I choke very easily on…anything & nothing. Sometimes I swear that I get the infamous (HUG) clear around my throat . P. S. My hearing in my left ear is crummy also…
Steroids will affect speech, too.
I have a weak squeaky voice at times. It seems to accompany getting too hot, being too tired, having other MS symptoms.
Mine does come and go- I hope yours goes away too!
Hearing, yeah- luckily when I reported decreased hearing at diagnosis (29 years ago), the experienced MS neurologist said it was an MS symptom.
It also comes and goes to some extent, but my the hearing in my right ear remains worse than the left.
Yes I too have that problem..when my voice gets really croaky but I can still talk and I’m always clearing my throat but it does go away??keep on keep’n on??
My wife had it. Look to Homeopathy to help you as it helped her.
I now am unrecognisable in the phone with a long lost friend recently reunited.
Will soon have to accept I need a wheelchair some of the time. Had another fall yesterday, no injury thank God, but my knees are so weak now.
Also I broke my back a couple of years ago, and my mobility has decreased tremendously.
Fed up with this lockdown.
Think I’ll have a duvet day tomorrow.
.Linda.
Yes that’s the test I had. Funny you said spinal tap as that’s the first thing I said to my spouse when I got got. I would have rather had another spinal tap than that too.
So humiliating.
I was put on Tecta (which I used to take regularly) last month when I was complaining of a cough and hoarseness. GERD can damage your throat. It cleared it up but as soon as my prescription was done it came back. I’m calling the doc tomorrow to get it refilled.
I lost my right ear hearing 29 years ago. Neuro’s office said (over the phone) it was a sinus infection. MS didn’t affect hearing. And despite allergies and many upper respiratory infections, I’d never had a sinus infection, and had no symptoms of one then. Neuro sends me to an ENT, who confirms hearing loss and no sinus infection. ENT refers me to an audiologist, who found interrupted connections in the 7th and 8th cranial nerves causing hearing loss. Sounded like MS to me. Shortly after hearing loss onset, my lower right cheek and smile were drooping and my voice wasn’t right. Function came back to the right cheek a couple weeks later but most of right ear hearing slowly came back after 6 months. Still have problems with voice and swallowing. In a loud, crowded room, and trying to speak, my voice is barely a whisper, and I feel like I’m shouting. I was told those nerves related to hearing and voice. I hope you get all of your voice back!
Yes my voice has been affected. My father cannot hear me when I talk, my voice is too soft. I dont have a croakey voice just very soft. As far as I’m concerned just about everything is related to MS. Sad but in my experience true. Swallowing is a challenge for me, mostly liquids, solids not so much. Also I have to concentrate on what I am doing, walking and chewing gum for me anymore! Walking to the car and my nose starts to run forget about it, I start to get all nervous about what I should take care of first and that’s no help at all! Go with your gut feeling about your body and its various functions! Trust yourself Ardra, I do. Hope you’re staying safe during this strange time. Love your blog and your clothes,etc. Good luck! ?❤
My first symptom that I paid attention to was aphasia. I had noticed that my handwriting was becoming childlike, which I put down to using a computer. But as a university professor when I couldn’t find the word, that communicated exactly what I meant…I went to a doctor who prescribed a MRI. Also, to cover her ass (not that I showed any interest in her derriere, covered or uncovered) she sent off a note to the Ministry of Transport, “shadows on MRI images “. That was enough for them to pull my driving license.
Ever since then, I have been monitoring my speech. With the lockdown, I have no one to talk to, so I picked up a conversation with a young woman in the elevator. I said, “Bored at home?” which in retrospect sounded creepy. I was relieved that the words sounded right. She didn’t look at me like I was drunk. She looked at me like I was a harmless pervert.
I love this post! And I feel ya on this one, like really feel ya. My voice isn’t always horse but it has intermittent horseyness and it’s so annoying. I always ask myself if this is my Ms or is it just that I am old, out of shape, short, tall, fat, skinny, etc. The list goes on and on! Thank you for your honest look at a challenge that many of us face ?
I think that is a great technique, with writing down, I will try this next time, I just hope I remember…lol What the brain cannot heal can be trained to take a different pathway, I have seen documentaries on this subject, we just need to figure out how to ‘redirect’ Warm regards!
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No matter what the test results show, find a good voice therapist. I have one. She’s wonderful. It like having another resource always handy.