One more thing, I had been told about 10 years ago, that the tingling in my left hand, the feeling like it was asleep, was something to do with the fact that I had arthritis in my neck. Okay that sounded right.Now I have no voice, which most of you all know. I have whispery, almost none exsistent speech since September. So for the past two days, I have been extreme pain, from neck, down my left shoulder, and my left hand is tingling again. And I will have to say that my speech is worse.
I went through a terrific choking sensation the other night prior to this neck pain. I know that we are grabbling at straws here, but I just wonder if all this pain now is because of loss of speech and it is related more to brain problem, some form of neurologia.
Thoughts please, public or private.
Jean
Re: Cervical neck pain
It is possible that the pain in your neck/shoulders could be that that you are developing spasmodic torticollis (ST), or cervical dystonia. I presume you know that SD is the voice that results from laryngeal dystonia, in other words a focal dystonia of the vocal cords. ST is another focal dystonia. In some cases SD patients go on to develop other forms of dystonia. I hope that isn't occuring in your case.David Barton (AD/SD, Auckland New Zealand)
Re: Cervical neck pain
I was told 10 years ago when all this started that it was cervical arthritis, but it has never been a constant thing. Now with my voice being gone for so long and such a strain to talk, I wondered if the other day when I choked on dinner and then spent a hard time talking on the phone (because they can't hear me) that over extended the muscles. But there I go self diagnosing again. If you read my other post of negative response from health care, I cannot get a referral back to the neurologist the ENT thinks it would redundent after sending to a voice ENT specialist, who says I have SD. But he will send me to a voice therapy. Im just so suppose to live with this pain, they should have it. Not you David, the docs.
Re: Cervical neck pain
Is it possible for you to go to your primary care physician with a chief complaint that is neurological ( focus on cervical neck pain) in origin and get a referral that way????? I don't know what kind of insurance you have but your primary care doctor should be able to make that referral.
Re: Cervical neck pain
Janice,See Jean's other posts. She has Kaiser (which ripped me off for years....I was presenting all kinds of medical info to them after years of voice problems and they refuted me) so your suggestion is very positive but it doesn't always work that way. Nothing is easy. --Lynne
Re: Cervical neck pain
I don't mean any disrespect toward your ENT physician, however 'twer it me I would certainly challenge him/her with the question of "Do you not think that dystonia can spread after the initial onset of one particular focal dystonia"? In your case, the original onset would be the focal dystonia of spasmodic dysphonia. If he/she answered "No" to that question then they are back in the dark ages!In some cases, one can begin with the focal dystonia of spasmodic dysphonia and then develop other focal dystonias affecting other areas of the body such as the neck, jaw, eyes, face, etc. Or visa versa. This is a well documented medical fact. I began with spasmodic dysphonia 12 years ago and I now 'sport' about 7 other focal dystonias and mine is still spreading to affect other areas of my body. Anne
Re: Cervical neck pain
I agree with you both. Unfortunately when I called they just passed a message to the ENT doc, I saw. So I think he answered the question, and has proved that they are in the dark ages, with NO to the neuro.So there you are, I will pursue the neck problem, because the pain is easing up, but it is still there and very annoying. I don't know how much they expect a person to take, as long as they aren't suffering. They did this to me when I was almost dead with Hepatitis. I won't do it again. If I don't get an answer I will call later on Monday and see my primary specifically about the neck pain, that has now shown signs of my left hand shaking like I have a intermittent palsy. This has happened before but I never put it all together, I just thought it was because I was exhausted from work, but one doesn't work anymore and still has these things, it makes you wonder. I also have spasms in my feet, that I have for about 13 years, that have progressively come on more. Is there a connection between MS and dsyphonia, or just Parkinson. Thanks to all. jean
Re: Cervical neck pain
You hang in there Jean and you may have to make some demands regarding obtaining a correct and thorough diagnosis of what is going on with this neck pain, the hand shaking and spasms in your feet.There is no connection between MS and dysphonia (dystonia), but in 'some' patients there is a combination of a focal dystonia(s) and Essential Tremor(s) and also in 'some' patients a connection between Parkinson's and the dystonia. I would strongly encourage you to get a referral to see a Movement Disorder Specialist who is 'very' familiar with dystonia! On the DMRF (Dystonia Medical Research Foundation) website http://www.dystonia-foundation.org/ you will find a list of physicians who are familiar with dystonia. A Movement Disorder Specialist will give you a thorough neurological exam and will be able to determine what's what or if you have a combination of a focal dystonia(s) and/or something else. You may have to fight with your insurance company as well 'if' a specific Movement Disorder Specialist isn't on your PPO plan. However, dystonia is still classified as an orphan movement disorder and it does take a specialist (movement disorders) to correctly diagnose it. You are entitled to demand this of your insurance company and get it! Good luck! It's the pits that we have to fight with these dang insurance companies for our patient rights - but it can be done. You may have to really get red headed and angry before it's over with, but stand up for your rights and go for it. Anne
Re: Cervical neck pain and Vetigo?
I am having episodes of Vertigo. I feel 2/12 years ago and did some bad damage to three of the vertabre in my neck and L5 Disk in my lower spine. I broke both my hands, had a concussion and a whiplash. I have been off work ever since and my symptoms from my SD have increased. I was wondering if anyone knew if Veritgo was related to SD and Neck problems.
Thank You for your help Diana
Re: Cervical neck pain and Vetigo?
DianaTo my knowledge, there wouldn't be a connection of the vertigo and SD. It may be that when you got the concussion and whiplash that your inner ear mechanism was involved?? This just a guess on my part. Have you had an MRI to check all this out? What does your doctor say about the vertigo? It might also be related to medication your taking? That's another possibility perhaps. SD can be related to neck problems. Sometimes one will start off with the focal dystonia of SD and then develop other focal dystonias, one of them being ST (spasmodic torticollis) which affects the neck area. You might consider seeing a Movement Disorder Specialist who is familiar with all types of dystonia and have this checked out thoroughly. Anne
Re: Cervical neck pain
MS is an autoimmune disease, with a progressive weakening in muscles and limbs because of destruction to the myelin sheath surrounding nerves. It's considered an inflammatory disease, and dystonia and Parkinson's are considered movement disorders. I like to think of dystonia as a spasming of muscles due to some supposed short-circuiting in the brain. With your cervical neck pain and numbness and shaking in your hand, I would want to have my cervical spine evaluated. I have consulted an osteopathic physician in the past for spine and neck problems (not related to dystonia) with good success.
Re: Cervical neck pain
Jean,
I have been dealing with this dystonia of my larynx and face for 5 years now, and I too, have had episodes of my hands and arms going numb and tingling for no apparent reason, or sometimes when I lightly put pressure that should not cause it to go to sleep. I thought it was a reaction to the Klonipin I take, but I wonder now that I read your experience. I experience pain not only in my neck, but up the right side of my face and head too, intense "brain freeze" type of pain and it re-occurs every few weeks. This whole dystonia, blepharospasm, thing is strange. I quit hoping for a cure, I just deal with each symptom, day by day.
Re: Cervical neck pain
The tingling is what started first, the neck pain has not gone away since my voice disappeared. Of course I mentioned to both ENT's and that's when they diagnosed the dysphonia, due to muscle tightness.
Im trying to get a neurology consult. I have noticed, by keeping a journal ever since this started, that if I have days when I have to talk to with people over an extended period of time then the my neck is worse the next day. Almost unbearable, it usually takes 3-4 days for it to get tolerable again.So, I guess in the interim, I cannot talk with people. Now, that makes me feel that Im being selfish, because it keeps us from being social with friends. I already don't work. So I spend my days alone. I don't know how they all think this is therapeutic, but I guess until we get to the route of things, it will keep my pain level under control, but my voice stays the same. Jean
Re: Cervical neck pain
Jean I know this may sound crazy, but I'm wondering if you're unconsciously tensing up in your neck area when you're trying to talk and project speech???? Sometimes we do develop bad habits when our voice disappears and won't flow normally. Have you tried standing in front of a mirror and talking? Watch exactly what your body is doing when you are talking I mean. It may be that your neck and shoulder area is really tensing when you are projecting speech. Again, this is just a suggestion. It happens though.How about your breath support? Are you feeling as though you're forcing breath to project speech? That's another common thing that we SD'ers do. Breath support is very important and the majority of SD'ers are shallow chest breathers. Start trying to take in a deep breath through your nose, then let it out slowly, ever so slowly, and while you're letting it out count in a whisper, one, two, three, four, etc. See if you can get up to a number above ten. Takes practice. Then do it over again and count in a 'normal for you' sounding voice. This relaxes the vocal cords and just may help. Good luck. Anne
Re: Cervical neck pain
Jean, My voice therapy helped with my neck pain. I still have it but it's better. The trick (and it is tricky) is to breath from you diaphragm rather than you chest. Keep the chest, shoulders and neck relaxed as much as possible so you're getting good air support when you talk. There are some goofy-looking exercises to do, but the best one for me is yawning. A big wide yawn and sigh with it. I hope you get your referrals! Voice therapy certainly isn't a cure--in fact I have very little voice now--but it does help me cope a little better. Good luck! Vicki
Re: Cervical neck pain
I had the neck pain before I lost my voice, as I said for at least 10 years very noticeable, just has really gotten worse and stays with me most all the time know. Does anyone just have it on one side versus the other. Mine is on the left. completely goes over my shoulder and down my arm a little. The main thing is tingling in my hand that feels like it has fallen asleep, which is what I first notice 10 years ago.Also, I can have this pain get increasing worse as the day progresses. I really don't have to be talking. I think Vickie understands or anyone else who has ABductor SD, I have a whisper to no voice all the time. I don't talk on the phone, unless I absolutely have to. But with my voice being only a whisper, there is no other choice than to strain to be heard. I do understand that voice therapy is not going to help much with AB,and Im resolve to deal with this.. It was suggested that I learn sign language. jean
Re: Cervical neck pain
I'm sorry Jean, I thought you meant that you had neck problems only after you'd been trying to talk for a long period.On the neck and arm deal. The ST (spasmodic torticollis) can and does affect only one side of the neck and it can also involve the shoulder area as well. I have the ST on the left and it involves my shoulder and my left arm. I also have Writer's Cramp in both hands. There have been times when I've experienced the numbing, tingling sensation that you're talking about. However, having said that, I did have all of this checked out to make sure that there wasn't something else going on besides my dystonia. Like some sort of circulation blockage, etc. that made me experience this numbing, tingling sensation. Again, I'd suggest that you see a Movement Disorder Specialist who is familiar with all aspects of dystonia to get to the bottom of your symptoms. On the ABductor type of SD. I know that it's a lost cause for anyone with this type of SD to overcome any type of noisey situation. It's just impossible to do. One thing you might think about is a voice amplifier. Those really do work and they enable you to talk without putting yourself in a stressful/strained situation in trying to project speech. On some AB/SD patients, Botox injections have helped. They are given differently from what an ADductor/SD patient receives and it's vital that the otolaryngologist who is giving these is well versed in the 'how to'. Voice/speech/breathing exercises will honestly help. They won't give you back a 'normal' voice, but they will help you with breathing techniques so that you're not just exhausted in trying to produce speech. It takes practice, practice, practice. It's frustrating as all get out I know! My frustration level with my dystonia stays 'off the scales'! There are many things that affect someone with SD in trying to produce voice - regardless of what type of SD they have. Stress, trying to overcome noise, the weather, the pollen, and on it goes. I've been winging it minus Botox injections since September of 98 and I have days when the voice is just the PITS! Then I have days when it's pretty good. One thing I have learned though is if I don't try to talk and remain silent for a day or a few days, then my voice just won't work at all. I'm single and only have my two dogs living with me, so they're the ones that get to listen to me practice my voice exercises on a daily basis. I look at it like keeping a machine oiled. On some exercises they howl with me! LOL Hang in there gal. Anne
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