[Raglet]

For a while my doctor has been telling me that he thinks that I have a problem with one of the nerves that go to my larynx, as everytime my lupus flares my voice goes weak. Well this usually clears up really quickly so it just hasn't been a big deal. I have a lot of nerve damage to my mouth, tounge, loss of my gag reflex and a little damage to my swallowing, so it's not really surprising if my larynx gets involved too. Annoying, but not surprising.

this time around the damage to my voice has been longer lasting. My voice is still very weak, and seeing I am currently teaching a university paper (I just do this once a year - one day a week for 8 weeks) - well, having a weak whispery voice is a nuisance to say the least.

anyone have any idea's about damage to the voice ? I am a bit clueless as to where I should start. I guess I should just let my fingers do the googling, but I had a hunch that there was someone else here who has had voice damage and maybe had some clues about where to head from here ?

I am still hoping that my voice will recover, fingers crossed. It is still early days (but then just to be pessimistic I know that when I am in the first few weeks after this sort of episode there is about a 50/50 chance of suffering from another episode - bummer).

thanks guys

raglet

 

[Raglet]

good old google 'left recurrent laryngeal nerve palsy'. That's what my doc was talking about. What a weird name for a nerve, 'recurrent laryngeal'. At first I thought that it meant that the palsy was recurrent !

We are assuming that it is the left because with me it usually is the left side that is affected (except with the nerve damage in my hands and feet which is part of my sensori-motor neuropathy).

Heck, I've never thought of it like that before, two different types of nerve damage doesn't seem fair. Oh well, that's life I guess 8)

cheers

raglet

 

[Lis]

Raglet - so sorry to read of your current difficulties with your voice - is there anything they can do to help you? I know how annoying it can be having a weak voice when you are trying to teach. I lead in-service sessions for teachers from time to time and scleroderma sometimes leaves me with a weak voice - the rheumy said it was due to dryness and thickening - I think that's what he meant. I find it unpredictable but very annoying when my voice either has no volume at all or sounds all squeaky.

Hope things improve for you soon.
Lis

 

[Lily]

Hi Raglet,

This must be so frustrating when you are trying to teach, I know how annoyed and flustered I get just trying to carry on a conversation at times. Mine is worse when I am overtired or stressed (isn't everything with us ) but always present to some degree. I hope yours is part of the favourable 50% - have faith

My problem is spasmodic dysphonia due to my dystonia, courtesy of my CNS Lupus.



love
Lily

 

[lazylegs]

Hi Raglet,

We have a dear friend that had hers damaged during a thyroid removal. At first she couldn't speak at all. Now she has more of a hoarse whisper. You have to listen to her very closely but she gets along just fine.

I hope yours is just a temporary thing.

Take care,
Lazylegs

 

[sjink]

Hi Raglet

Here's hoping your voice will recover. There is a case mentioned on the internet of nerve palsy (and lupus) that resolved itself with steroid therapy- http://rheumatology.oxfordjournals.org/cgi/content/abstract/29/4/308

I don't know much about voice damage I am afraid, I lose mine a lot with throat infections and treat it with honey and glycerine and lemon drinks, but doubt if that would work in your case as the problem differs. Sure feels nice though as its going down.

Sending you healing thoughts and hope for a better week ahead for you
Sara
xx

 

[lin]

so sorry this is happening, but no clues ,i hope thigs get back to normal soon Lin xx

 

[halfpintfl]

Hi Raglet, I am so,so very sorry about your throat, and how
you feel. You may have been thinking of me as the person
that posted about my voice. I loose my voice a lot, too much for me. It does not go to a wisper, it goes very hoarse, and yes, my gag reflex is involved. I usually can even choke on trying to take a drink of water. Today , I am
really in a stink-mood, I am tired of not being able to casually sit down and eat a meal. So, I do know exactly
what you are going thru. There is only one piece of advice
I can give you, and that is to eat and drink everything
just room temp. or above. Not hot and not cold. You are
a very sweet thing and I send (((hugs)))) and hope that
you can improve some real soon.:wink2:

 

[Raglet]

the honey and glycerine drinks sound gorgeous, even though it won't fix nerve damage it sure tastes good !

Halfpint - sounds like we have some similarities, but differences too. My lack of gag reflex doesn't affect my swallowing, it just means that the back of my throat can be touched without me gagging.

But I have also lost quite a bit of sensation at the back of my mouth, so often I will not swallow salivia in time, and it will start heading down my throat and I have to do a hurry up swallow. I do have some disregulation caused by my tongue damage that affects my swallowing as I find it hard to position food in my mouth properly so it can be swallowed, which is just so silly when you think about it (which I don't too often).

On the all I am able to eat ok, but have some trouble with liquids especially if I am not sitting upright. Actually I have most problems with things like grapes and mandarin segments which burst unexpectedly in my mouth.

The voice thing has been going on for about 6 months, and the tongue thing for about 2 years. It seems totally crazy that my ability to speak is being affected by damage to both my larynx and my tongue itself. The tongue thing makes me sound like I've been in the pub all day (I wish!) as I have very limited movement in it, while the larynx thing makes me sound hoarse.

Oh well, fortunately I am quite good at staying positive, coz if I thought where this may lead with my tendency to acquire permanent damage then I might just have to find a cliff to jump off :lol::lol::lol::lol::lol:

hoarse cheers

raglet