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See no Evil, Hear no Evil, SPEAK no Evil


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#1 sophiebun

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Posted 23 October 2008 - 02:47 PM

I started losing my voice in May of 07 and it got progressively worse over the past year and a half. I saw an ENT who told me my vocal chords were "bowed" not coming together to speak, I had speech therapy for 6 months and it kept getting worse, if I talked more than 15 minutes in a row I would lose my voice entirely and during the 15 minutes I sound like I'm gargling gravel. The doctors put me on vocal rest, I even have to use a TTY telephone, I'm basically mute for going on two years in six months. It hurts sometimes if I try to overdo it speaking for 5 minutes at a gargling tone more than a voice or get around irritants like toxic chemicals and harsh perfumes. I use medication for my asthma, no steroid inhaler, but took Prednisone for 15 years. straight and now off and on.

When I go to the store and try to say one or two words to the cashiers they can't understand me, or I don't have enough strength/volume in my voice besides the horrid hoarseness and they don't even try to understand. I see them do the same thing to people with accents that are perfectly clear if you'd take a second. I try to do most things by email but with the hands it's not easy either.

I had an MRI in July of 07 and it showed enlarged lymph nodes in my neck but no cancer which is what they thought at first at the hospital. My lymph nodes are still enlarged a year later, I am due to have a GI do an endoscopy in a month or so and do biopsies or whatever if he finds something. Things at the county hospital move very slowly.

I'm trying hard not to become very depressed over losing one of my three main senses, but I guess it is easier to adjust to than becoming blind or deaf.

It is even hard to eat warm foods as I feel like the steam builds up in my throat and makes a "sauna" does anyone else get that? I see a resident at the county hospital and I get the feeling she thinks I'm whacky when I try to explain my symptoms to her because they are hard to put into words.

#2 Margaret

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Posted 23 October 2008 - 03:12 PM

Hi Sophiebun ,

My son had little or no voice during the initial 9 months of sclero. It did come back after he was on the Plaquenil for a month or so. Is yours a side effect of years of Prednisone or from sclero? G's epiglottis was also so enlarged, in addition to 'hard' vocal cords. Sure hope they can find a medication to help you.

Take care, Everyone.
Margaret

#3 Amanda Thorpe

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Posted 23 October 2008 - 05:07 PM

Hello Sophiebun

I am sorry you're having this problem. I have not encountered this.

I find cahsiers etc can be off because I usually go out in a wheelchair. They're either falling over themselves to help, think I'm simple or just ignore me, you can see people trying to avoid making eye contact! What surprises me most though is my reaction or lack of. I never say anything and that's very unlike me. :blink:

I hope you find some relief soon.

Take care.

Amanda
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#4 barefut

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Posted 23 October 2008 - 05:40 PM

Hi and welcome sophiebun, Sorry I'm late in welcoming you!

I am sorry you are having to deal with losing your voice. I know a little about how frustrating and even embarrassing it can be. I have ongoing problems with hoarsness and sometimes my voice diasppears altogether in the middle of a sentence - usually when I am talking to a customer at work or as soon as I answer the phone. <_<

Clearing my throat usually ends up in a coughing fit. It's embarassing - and then people think I have something contagious and they sort of back away from me. Can't say I blame them as awful as I sound sometimes.

Have you ever seen a scleroderma specialist? If your intern knows her stuff about sclero then she should know that we are full of wacky symptoms! :lol:

I have not experienced problems eating hot foods but rather iced drinks and ice-cream and popsicles will make me cough. Sensitive esophagus from reflux I suppose.

Do you have reflux problems too? Do you take anything for it? I guess your GI and endoscopy will tell you if there is any esophageal damage. Glad you are keeping up on it with your doctors.

Keep us posted

#5 sophiebun

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Posted 24 October 2008 - 08:34 AM

I'm glad your son's voice is doing better, and that I'm not the only one. I'm not on plaquenil. Can you believe the county hospital is so backed up that I have been waiting 4 years for a rheumatology consult so have not ever seen one?

I was diagnosed with Lupus 15 years ago by a rheumatologist when I had my HMO and still worked. I have been diagnosed by my resident now with CREST but she wants me to see the rheumatologist too.

No one has told me what my larynx problem is from, hopefully the endoscopy will give some clues.

#6 sophiebun

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Posted 24 October 2008 - 08:35 AM

Thanks Amanda

#7 sophiebun

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Posted 24 October 2008 - 08:40 AM

I get the coughing from cold foods too, but I've always figured that was my asthma because I will cough and wheeze in cold air too.

Sadly I don't even have an Internist, just a first year resident at the county hospital. I'm on SSDI and am on the county medically indigent plan since I'm so broke so I don't get the best of health care. I am not seeing a specialist and have been waiting 4 years for my rheumatology consult and my resident called the GI attending to get me an emergency endoscopy and exam when I was in last month but they still haven't called. It may be a year too, I've been waiting 8 years for my opthalmology exam, LOL. It's ridiculous.

#8 Margaret

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Posted 24 October 2008 - 09:42 AM

Hi Sophiebun ,

I am so sorry that is the type of health care you receive. It's an embarrassment to me and probably a lot of others since we are suppose to be in a civilized, modern world not some third world country with no doctors. Thanks for the heads up on San Francisco doctors, though I won't ever be moving there!!!

Take care, Everyone.
Margaret

#9 debonair susie

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Posted 24 October 2008 - 03:45 PM

I too am so sorry to hear of your plight, sophiebun. :o

It's hard to believe the ENT couldn't do any better for you, other than order "rest". It seems they throw up the white flag of surrender earlier than they should.

Is it going to be permanent, the bowing of the vocal cords? I'm going to keep good thoughts for you and hope that a solution is close. I feel so bad for you . :unsure:

In the meantime, please know that I'm thinking about you.
Special Hugs,

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#10 sophiebun

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Posted 25 October 2008 - 08:20 AM

Margaret, there are many great rheumatologists and other doctors in San Francisco, just not at the county hospital in the clinics for people without good insurance or HMOs. The city is beautiful so please don't let that stop you if you'd like to come. I think it's the being poor, I imagine I would get this same county hospital or free clinic "band-aid" care wherever I lived.

#11 sophiebun

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Posted 25 October 2008 - 08:33 AM

Hi Susie, thanks for your good thoughts. I only saw the ENT one time in a clinic at the county where they had 50 people scheduled for a 1:00 appt. and I got in at 4:30. The ENT is the only one for the county and comes only one afternoon per week, so basically is only concerned if you have cancer.

The endoscopy he did took literally less than 10 seconds, I don't know how he had time to really see anything except for NO cancer maybe. Then he said, "Good news you don't have cancer, bad news you have bowed vocal chords." I said, "So what do I do?" He said "Well I could send you to speech therapy but what would be the point?' I said " I want to go, would you please arrange it?" He says, "Well, you wouldn't even know where it is, or have any way to get there." I said, "I know where the rehab hospital is and I would drive my car the same as I got here." I think he just didn't want to fill out the paperwork and take the extra few minutes.

But then the speech therapy didn't work anyway and now I'm on vocal rest due to "orders" plus due to I literally can't speak more than 10 -15 minutes without losing all sound and the sound I have for 15 minutes I sound like a heavy smoker who has gravel in their throat, and my brother used to tease me I sounded like Minnie Mouse because I have a usually high female voice. When people call on the phone if I answer, they say "Sorry I woke you up," or I sound "mad". At least the vocal rest helps the pain, if I don't speak my larynx doesn't hurt at all.

I'll post after I have the next endoscopy which was supposed to have been done 4 months ago and now the resident said she'd speak personally to the GI attending and get me into the clinic in the next week but that was almost a month ago and no word. I don't really want the test, and I'm nervous about the results, but I'd like to just get it over with.

I see a pulmonologist out of the county hospital, with just my Medicare, and when I call his office they say, "He can see you tomorrow at 2:30", it's like a whole other world out of the county hospital, LOL,but I can't afford to pay the 20% of all the Endoscopies and MRIs if I don't go to the county.

#12 Margaret

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Posted 26 October 2008 - 02:52 AM

<<The city is beautiful so please don't let that stop you if you'd like to come>>

Hi Sophiebun ,

I know that San Francisco is beautiful. My dear husband and I spent a long weekend there once. I used to live in Brea, California. We would do the drive up along the ocean from Los Angeles to San Francisco, it was absolutely beautiful!!! It would take us twice as long as others because I would have to stop every 1/4 mile for another photo!!! I am very embarrassed at our health care coverage in the US. Enough said about that. I really feel for you, though, and wish it wasn't so bad for you to get the health coverage you need.

Take care, Everyone.
Margaret

#13 razz

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Posted 26 October 2008 - 04:38 AM

Sophiebun,

Sorry to hear your vocal cords are affected. You should be able to go to any healthcare facility and not be limited to the local county hospital where the medical treatment is not up to par. You're right about that 20% out-of-pocket as a reason for having to choose between excellent treatment and substandard care. It shouldn't be that way. I do hope you find someone soon who can help you.

I visited San Francisco back in my heyday. It really is a beautiful city with so much to see. I couldn't get over driving up and down the hills! It was a lot of fun and we took tons of pictures.

Hugs,
Razz
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#14 thisisme

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Posted 23 April 2009 - 10:54 PM

Hi Sophiebun, How are you now?

Reading your post, took me right back, to 4 years ago, I thought I had swallowed fish bones and was constantly coughing, to release them. I could only say a word, without having to take a sip of water, only to be able to say another word.

I went to general practitioner, he couldn`t see anything, sent me to ENT, he looked with camera, said the esophagus was inflamed and would have to have general anesthetic to have a better look.

It turned out that acid reflux was great, even though I never felt I had heartburn.

He said the vocal cords were damaged and bowed and sent me for voice training, like you, my voice was gravelled.

I can`t remember the medication he put me on, I only took one course.

After about 6 months voice training, I am as well as I can be, even though I am nearly always thought to be a man, when talking on the phone!

I have since been diagnosed with CREST with Morphea.
Take care.
Lynne

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#15 Peggy

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Posted 24 April 2009 - 09:53 AM

Being you are on Social Security Disability, are you able to get on Medicare and a supplement? Would this be better for you and to get access to better health care than what you have? With Medicare paying 80% and the supplement you pick taking care of the other 20%, you are 100% covered and almost every doctor and medical facility takes medicare. I know that my 2 year time limit to get on Medicare is in January and I plan on switching to that rather than the plan I'm on with my husband at his work as it will be so much cheaper for us and I'll have the same medical coverage and half the cost. It was just a thought..................

Warm hugs,

Peggy

#16 bookworm

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Posted 24 April 2009 - 12:40 PM

Hi Sophiebun,
I am sorry to hear of your plight and really angry to hear about the healthcare situation you are in. That is ridiculous. There must be something that can be done!

I have never heard of what you have -- bowed vocal chords. But, I will say that I began losing my voice every time I used a certain asthma inhaler. The doctor said that definitely wasn't the cause, then another doctor said it was! I already knew it was though, because it happened every time I used the stuff. I am sorry I can't remember the name of it but it was called a Discus and was either a turquoise or purple thing. I wish I could remember the name of it, but it's been several years ago.

Are you using anything like that?

Also, I would think acid reflux could easily cause something like that, if it were left untreated -- and it sounds as if you are, generally, being left untreated. I take an over the counter medicine for my reflux (which was scarring my esophagus, which caused much difficulty swallowing). I'll be happy to tell you the name of it if you like. I get the generic form of the stuff, which is much cheaper than the purple version of the pill.

I hope you will look into getting more medical help. Complain to the right person and maybe you will see some action! Good luck

Mary in Texas