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Loss of voice


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#1 red

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Posted 16 May 2010 - 11:03 PM

Hi all, this morning I woke up with only a hoarse whisper of a voice. Other than a cloggy feeling in my throat and a mild cough, I feel okay, certainly no raging cold symptoms! This happened last month too and lasted around 3 days. My voice started changing about a year before I was diagnosed with crEsT (Raynaud's appeared later)- my doctors thought it was due to the reflux. I've had a fundoplication and no longer feel any reflux, although they say I still have "silent" reflux - when I've tried to stop the anti-reflux meds (against medical advice - I know, not a smart thing, but the reflux was gone after the surgery, I didn't think I needed it anymore!) I got more nighttime asthma attacks and worsening of the voice.

I just completed pulmonary function tests and a consult with a pulmonologist recommended because of a bad winter with flu, pneumonia, increased asthma and still have a feeling of tightness in my chest, but passed the tests with flying colors! The doctor did double my reflux med because she thinks the surgery has "relaxed" and I'm getting more reflux. Both the pulmonologist and the rheumatologist referred me to an ENT because of the chronic hoarseness of my voice, which has worsened over the past year, haven't been to my appointment yet. I have had my thyroid levels checked, they are normal.

Maybe coincidentally, I've developed more pain and stiffness in my hips and shoulders over the past 6 months, and I think the chest tightness is part of this -- all of this was much better when I was on prednisone over the winter, but quickly returned after I tapered off it, am now on Celebrex which does help some, but not nearly as much as the steroids did.

Anyone out there dealing with voice issues? Is this just another part of the sclero?

Thanks for listening! It is so frustrating not to have a voice, it helps at least to vent in writing!!

red

#2 Shelley Ensz

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Posted 17 May 2010 - 03:34 AM

Hi Red,

I'm sorry you are experiencing chronic hoarseness. As it happens, systemic scleroderma can cause dysphonia, which is the medical term for hoarseness or loss of voice.

It can be evaluated with a videolaryngostroboscopy. See our section on Esophageal Involvement: Dysphonia on our main sclero.org site.
Warm Hugs,

Shelley Ensz
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#3 Margaret

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Posted 17 May 2010 - 03:58 AM

Hi Red ,

Losing his voice was one of the main symptoms of Gareth's onset with Sclero. He had little or no voice for 8-9 months. The doctor speculated the vocal cords hardened along with the esophagus, rib cage, etc. Made sense to me. His voice came back after being put on Plaquenil.

Take care, Everyone.
Margaret

#4 janey

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Posted 18 May 2010 - 05:05 AM

Red,
I dealt with a very hoarse voice for the first couple of years, then it suddenly went away. Two years ago I got a cold which turned into laryngitis, then hoarseness. The hoarseness lasted for months, but then again, suddenly when away. It's a strange disease in which some things just come and go with no rhyme or reason. I found eating and drinking cold things made the hoarseness worse for me, so you might see if that's the same for you. I hope your hoarseness eventually goes away as mine did.
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#5 Sweet

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Posted 18 May 2010 - 05:34 PM

Hi Red,

I do have a friend that just underwent surgery for this very thing. She is in the recoup stages right now, and is having voice therapy. She's healing well.

Shelley, wow that was a long word :)
Warm and gentle hugs,

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#6 red

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Posted 19 May 2010 - 11:33 AM

Thanks all, for your posts. Janey - the cold drinks do make it worse, I've found that hot tea soothes the voice the best, thanks for the suggestion.

I saw my primary doctor on Monday - there is no sign of strep or other infection, put me back on prednisone (seems to be a magic drug for me - helps everything!) and got my ENT appointment moved up to this Friday..which of course means more and more tests...but hopefully some answers.

Thanks for being there everybody. Nobody understands like a fellow sclerodermian!

red

#7 red

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Posted 21 May 2010 - 08:59 PM

Was evaluated by the ENT on Friday. They did a flexible tube video scope (thru the nose and down the throat - not pleasant at all but not as bad as the esophageal manometry, thank God!) My vocal cords are scarred and hardened - the doctor felt both were attributable to the scleroderma and the reflux. No polyps, infection or anything that can be easily treated. The damage is most likely irreversible, and she said she would discuss with my rheumatologist to see if any med could be recommended to prevent any further damage. In the meantime, she recommended another few days of voice rest, and advised no caffeine, chocolate, alcohol, mint or acidic juices, etc. to minimize reflux and more irritation to the throat. Have progressed from just the whisper to a croaky kind of voice, hopefully will improve more over the weekend.
Am very discouraged, the body is just not being very dependable lately! With the voice issues, joint pain, diarrhea and running to the bathroom, breathing difficulties, not to mention dr appointments!...it is getting hard to get through a week of work without missing days. I am fortunate to have a job that I love with only 6.5 hours a day, a very understanding and sympathetic boss, (as well as a bathroom right in my office!), but am getting to the point where I need to consider a medical leave and/or long-term disability. Am planning to have a sit down with my rheumatologist and/or my primary soon and try to sort things out...Meanwhile I'm up at 4 a.m. writing this because I can't sleep!!
Thanks for letting me vent!!
Hoping you all are getting a better night's rest than me,
red

#8 Vee

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Posted 22 May 2010 - 01:57 PM

Hi Red,

I haven't been here in a very long time! But a good friend of mine brought this post to my attention.
About 3 years ago, my voice started getting hoarse, like I had a cold or laryngitis, but as the years have worn on, it's gotten worse and worse. My voice got to be almost nonexistent on some days and on the days I COULD talk, it sounded like there were 3 or 4 people talking at the same time.

Finally, I had to do something about it so went to an ENT. Actually I saw two of them. The first one told me that I needed a videostroboscopy and he didn't have that equipment, so I found an ENT that did. He showed me the pictures that he took of my vocal chords with this machine, and they were very lumpy and inflamed. So that's why there were so many tones coming out at the same time. With all those lumps and bumps my vocal chords couldn't vibrate smoothly together. So I had a CO2 laser surgery to remove them, and the findings were "abnormal tissue", that the doctor is certain is from the sclero, especially with the early years of my constant coughing, and collagen degradation, which is most definitely from sclero.

It's been almost 3 months since my surgery, and my voice is definitely stronger than it was pre surgery, but still needs work. The doctor said that I would probably never sound like I originally did, but that I can definitely sound better than I did. I now have to undergo voice therapy, and have only had one session and I see an improvement already.

I hope you find something that works for you. Good luck!

Happy and Warm Wishes,

Vee
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#9 Sheryl

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Posted 22 May 2010 - 11:18 PM

Thanks Vee, for telling your story.
I am sure there are many people that feel nothing can be done. Others that are afraid of this procedure, though by hearing someone's story it may change their life. This forum is about getting proper information out to others. This information can help people way the pros and cons of their individual situation's. Red there are many things that can be done to change the course of this disease in your body. Your bowel issues can hopefully get rectified soon also with the proper treatments. You have to be very honest with your doctor's about what is happening so that the proper prescriptions can straighten out what is going on.
Strength and Warmth,
Sheryl

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