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Lost Voice


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#1 peanut

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Posted 24 February 2008 - 07:40 PM

(Pretend with me this is a back of a milk carton)
Lost: Peanut's voice
Last Seen: a month ago it was still hoarse. Lost it completely 3-4 days ago.
Description: Perky. (or so I'm told) Owner tends to forget but wouldn't go without this one.
Reward: Yup!

I talked to someone whose actual voice box was attacked by scleroderma. I don't remember who so if you're out there... please help. This person told me it was a hard deal to figure out. If this is happening to me I wouldn't even know where to begin - a good ear/nose/throat specialist? My husband thinks its due to all my coughing and meds. My cough is fierce and even the strongest prescription cough syrups + tessalon pearl + spiriva + symbicort aren't helping. Also, prednisone... ugh seems to take it away- I just dropped from 20mg to 15mg predisone and now actually that I think about it my voice was at least hoarse with 20mg. Also, I use a steroid inhaler and my doctor thinks I suffer one of its rare side effects: voice hoarseness. She thinks that's the cause of this whole mess.

Please if you have any thoughts let me know. I'm so irritated. I'm 32 days from leaving for my stem cell transplant so I'm not excited to go to another specialist for a symptom especially when the transplant will hopefully take it away. But I might have to... sigh

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#2 Buttons

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Posted 24 February 2008 - 10:33 PM

Hi Peanut

I have asthma and used to use 4 different inhalers including a steroid one which I had to take 4 times a day and my voice also went very hoarse. It was so bad my general practitioner referred me to an E & T consultant who after doing some tests said it was the effect of my inhalers. He advised me to use a 'spacer' device so that the powder did not go directly into my mouth and afterwards to have a drink of water which would help to clear the powder off my throat. It did take a while for the voice to come back to normal though.

I hope you get it sorted soon so that it can ease your mind.

Do take care of yourself.

Jensue

#3 peanut

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Posted 24 February 2008 - 11:03 PM

How long did it take for your voice to come back?
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 susie54

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Posted 25 February 2008 - 01:26 AM

Hi Peanut,

I have been attacked twice with voice loss through my MCTD> It actually sent me to the ENT who did alot of tests and concluded that acid reflux was worse and needed to be treated more aggressively. As usual, by the time you get worried and get to the doctor and get evaluated, it starts to go away on its own. Took about two months. I was very hoarse and down to a whisper at the worst of it. I think it just happens. Hope you get better soon. Susie54

#5 Margaret

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Posted 25 February 2008 - 02:26 AM

Hi Peanut ,

I don't know if your remember but Gareth lost his voice when this sclero first hit. He had little or no voice from Nov - June. The doctor said it could be the sclero affecting the vocal cords (hardening up) or the fact that he had restrictive lung disease and didn't get enough air into his lungs to force out for talking.

I will keep my eyes out for a *voice* floating around somewhere!!!

Take care, Eceryone.
Margaret

#6 Buttons

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Posted 25 February 2008 - 03:17 AM

Hi Peanut

It took about 3 months I think to get it back properly, I was teaching at the time so that didn't help either.


Jensue

#7 peanut

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Posted 25 February 2008 - 03:36 AM

wow. I'm glad to know I'm not the only one.
Hum I wonder how the figured out Gareth's vocal cors were hardening.

hnugs, peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#8 Vee

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Posted 25 February 2008 - 04:24 AM

Hi Peanut,

My voice has been on the blitz for over a year now. I absolutely hate it. That was one of my things I wanted to fix this year. I've seen an ENT specialist and she said I have nodules on my vocal chords due to the scleroderma cough. Whenever you cough, it slams your chords together. So back when my cough was severe, it actually formed callus like nodules, and that keeps your chords from closing smoothly to make your voice even. Mine cracks like an teenage boy. Somedays I don't have much of a voice at all. And on those days, I get exhausted just trying to force the words out.

Good luck.
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 peanut

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Posted 25 February 2008 - 10:32 AM

I'm worried about damaging my voice box. I've been reading up on nodules & polyps and if they're not treated properly you can be mute... that's no good. I don't know what to do. Tea, hot water, resting it... nothing seems to help or maybe its as you guys have said - just slow healing. It would go away if I stopped coughing but that's something I can't seem to fix. Sigh. I just gotta hang in there for 31 more days till Chicago... 77 days till my new stem cells and hopefully that will solve the coughing.

Hangin' in there- mute but with hope,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#10 Margaret

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Posted 25 February 2008 - 11:01 AM

<<Hum I wonder how the figured out Gareth's vocal cors were hardening.>>

Hi Peanut ,

I think it was just a guess from an ENT who hadn't worked with sclero pts before. He could have stuck a fiber optic scope up G's nose and looked at them on the spot, but there is no way G would have tolerated that. I know I would not have!!!

Take care, Everyone.
Margaret

#11 LisaBulman

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Posted 25 February 2008 - 11:53 AM

Peanut,
Even though you don't have a voive we can still hear you loud and clear! :)

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
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(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#12 Shelley Ensz

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Posted 25 February 2008 - 03:38 PM

Hi Peanut,

It would actually take the experts to sort it all out, of course. But scleroderma can affect the vocal cords, causing dysphonia (the official name for hoarseness or loss of voice).

Here is the link on our main site:
Scleroderma and Dysphonia (Hoarseness, Loss of Voice)

They evaluate it with videolaryngostroboscopy. Which is an awful mouthful for someone who can't talk, isn't it? :P

Evaluation of Dysphonia in Patients with Scleroderma with Videolaryngostroboscopy. Scleroderma affects the larynx and causes the dysphonia. This could be due to the over production of the extracelular matrix and the oedematous stage of the disease. There is still a need of a large series to show the types of the laryngeal pathology.

But of course your cough will probably need to be quelled first, as that is the more likely cause of it. I get laryngitis very often (about four times a year usually). Luckily nobody is even aware of that via computer, and I find that I write and do artwork more when I can't speak, as it puts a bit of a damper on more sociable activities.

I hope you feel a little bit better...soon!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 Clementine

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Posted 25 February 2008 - 05:09 PM

Oh Peanut. Sorry! Hope you are resting your voice. I lost mine once when I had strep throat. I was told not to whisper, that it is not good for your voice box! Drink tea.
Smile.
Tangelo

#14 Cheri

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Posted 25 February 2008 - 05:40 PM

Hi Peanut,

I don't know anything about Sclero and hoarseness, but I just wanted to say I'm so sorry you are going through so much. I hope the days go by fast for you so you can have your stem cell transplant.

Hugs,

Cheri

#15 Sweet

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Posted 26 February 2008 - 08:23 AM

Hey my little nut,

I don't have any experience with this at all, but I want to tell you I'm sorry you are dealing with this. I know how frustrating it can be. I used to totally lose my voice for no apparent reason for 2 weeks every winter. This was long before I was diagnosed with Sclero. One winter I didn't get it.........and I thought. "Hmm weird" never had it since. Hang in there, and I hope this won't interfere with your transplant.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#16 peanut

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Posted 26 February 2008 - 09:31 AM

I'm very thankful for chat programs, text messaging, and boards like this otherwise I don't think I could communicate with my friends. I'm taking all these anti-fungal meds. They're disgusting.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...