What the heck is this?

[mokibear]

Hey all,

I know I don't post much these days except to come on and ask questions but I was at a point where I just didn't know how to support anyone anymore as I'm so lost myself. But here I am asking another question.

I did do a post recently about some balance issues as I've been in a flare of whatever for a month now. My legs were wonky, both doing different things, left hand tremors, stuttering and slurred speech and then the balance thing which at least that part thank goodness only last a few days.

My speech was finally getting better with only a bit of residual slurring left and I was thinking finally I'm on the mend. Nope, apparently not. Something new now.

I've had hoarseness and squeaking of the voice off and on for years but what's happening now is bizarre even by my standards. I go to say something and the first word or part of it will come out okay and then it's gone to a whisper. The only way I can describe it is if you were listening to the radio and kept turning the volume up and down. It's this constant back and forth thing and driving me more batty then I already am.

My family doc is trying to get me into a new neuro which can take a while so I'm waiting to hear from them when the appointment is but meanwhile I have no idea what the heck is going on. Would this be neurological? Does anybody have a clue what's going on? If you have any insight, I'd appreciate it.

Bizarro Moki

[mokibear]

Jan, I've been to an ENT albeit years ago for ongoing vocal problems I had. I'd get the hoarseness of voice lasting anywhere from a week to a month and would get it at least 4 times a year. He thought possible Gerd at the time but when he checked he said my chords were fine and no damage but that I had a cyst on the chord and thought that may be the problem. My dad just reminded me that after the surgery, I could barely even get out a whisper for a week. The ENT said there was no reason he could determine for that and said there was nothing more he could do. I still get the hoarseness although not as frequently.

Thanks for the info and who knows, maybe I do have it now. For now though my doc wants to try the neuro first and then go from there.

Summer, I have the head tremor too off and on as well as head jerks. Parkinson's was thought of as my left hand will tremor at rest but they said I didn't fit as my legs acted up more when I was trying to walk and not at rest. The head tremor and jerks though started after I had seen the last neuro.

Thanks again for all your thoughts and ideas on this. It gives me a lot of food for thought and different avenues I can look at. Not everything is necessarily from one thing alone and I may have something else going on at the same time. Now it's just a waiting game to see when I can get into seeming someone.

Hugs
Moki

[summerluvr]

My mom's freind has something like parkinson's that affects her voice.  Or maybe it is parkinson?  It is caused by tremors in your vocal cords, so when you try and talk they don't move how they are supposed to vibrate.  She has a head tremor too though....

[BOK2Bjan]

It's already been said - and disparagingly at that - but there is some merit to the GERD issue.  I have had a lot of problems with acid damaging my vocal chords.  I have MS as well as Systemic Sclerosis, so my esophagus is a joke of an organ, and my LES is very lax.  I aspirate gastric contents anytime I sleep and when I was having the severe hoarseness, I went to a ENT, who did all kinds of tests, but he could visually see that acid had damaged the chords.  They were red and inflammed.  He also said, which I've read as well, that many people who never have actual "heart burn" can experience this.  The acid bypasses the esophagus tissue and splashes all the way up to the larynx, causing the inflammation.  (Lucky me - mine is damaged all the way up)

I realize how complex the diagnoses can be - I am quite a puzzle myself.  I just wanted to add this, since it is a relatively "simple" problem to fix.  Docs feel like mine is a mixture of neurological and mechanical (due to damage from the other diseases).  But definitely check it out. And I agree - an ENT is a great place to start.

Blessings, Jan

[mokibear]

WAF, I'm sorry you have the same thing and I know you must get as frustrated as I do with it. Being able to communicate is important and when neuro don't care, it's even more frustrating.  I don't think it's ALS as I've been having problems for years now but it's been the last 5 that things have progressed but not quickly. It's more that where I had breaks before, I don't seem to get any now. I have things now that don't ever fully clear up. I do hope you can get somewhere with it and I'll let you know if I get any answers.

Ren, Thanks for the wishes and I too wish I could feel "normal" again even for just a few days. It would be nice to remember what that was like. lol

Jen,  That was an interesting article, thanks for the link. It could be what this is but I sure hope not. The longest I've gone with with speech problems was 2 1/2 months, I sure wouldn't want to go any longer than that with this.

Kelly, Thank you for the heads up on med interactions with that. I would never have known that and I'm sure most neuro's don't pay much attention to that either. Must have been scary for your partner to go through that.

Again, Thank you to all of you!!!

Hugs
Moki

[anon07072023]

If you do end up having dysphonia / dystonia, you have to watch what prescriptions you take and are given.  We found this out the hard way when we went to the ER one day.  They gave my partner Phenergan and she automatically started having a dystonic reaction to it.  It made her throat and her face start to go into involuntary spasms and they had to quickly run and give her Benadryl to stop the spasms.  

The anti-nausea drugs in the phenothiazines class have been to known to cause these types of reactions if you have dystonia / dysphonia.

[jensequitur]

I wonder...  You know the cartoonist Scott Adams, right?  About two years ago he started having spasmodic dysphonia.

Read this article - it's interesting and explains better than I can.

http://abcnews.go.com/Health/MedicalMysteries/story?id=5480171&page=1

[rendean]

Dear Moki,

I'm sorry you have yet another symptom there in Limboland. I so wish you could get a break and feel "normal" again. Not that many of us remember what that is. I just wanted to pass along wishes for some answers sooner than later.

Hugs,
Ren

[MsWobbles]

Another neurologic possibility for vocal volume loss could be Parkinson.

WAF

[MsWobbles]

Dear Mokibear,

I empathize with you totally - I have had the same thing.  My voice will come and go - hoarse for a while, then normal.  My volume suddenly will decrease.  I have had trouble saying consecutive words with L's in them and sometimes my words come out wrong too.  I've told numerous neurologists:  They don't care.

The standard pat medical response to this often is, "It's GERD (gastroestophageal reflux disease)."  In other words, they claim acid reflux is damaging your vocal cords and causing this.

A real possibility that I hate to even mention, yet it is a real possibility and you are looking for an answer, is ALS.  In this country it is not uncommon to delay ALS diagnosis until you only have about a month left to live.  Hope things are done better in Canada.  Check it out.  Hope you don't have it.

WAF
  

[mokibear]

G-Girl, You're hugs are so appreciated and I really needed them today, thank you and thanks for the luck, I think I need it. lol

Corina, Hi to you too and I'm in Ontario, a hop, skip and a jump from you. lol I haven't had much luck with docs either and yes the process for testing can be agonizingly slow. I'm hoping maybe whomever this next neuro is, is a fighter and willing to go the distance with me. I wish you better luck with your docs.

Shell, I did see the my family doc just a couple of weeks ago with the stuttering and slurring and the nurse said she heard me on the phone so she would explain how I am now to him. She said she'd call back if he wanted to see me himself and I haven't heard anything so guess he's just adding it to my list. lol  I've missed being here myself hon, just have been in a not very good place for a while.

Thank you to all of you for your support and thoughts on this. It's funny how I've gotten so used to some of my symptoms that they just seem part of me now. eg, wonky legs But my speech is something I just can't get used to having issues with. Not only do I sound like a dweeb, it get's so frustrating when people can't understand you and then out of the goodness of their heart, try to interject what they think you are trying to say. Usually they are wrong and then I have to start all over again and at times I'm ready to tear my hair out.

This forum is such an incredible place, I've said that over 3 years ago when I first joined and I still believe it now. Again, thank you to all of you from the bottom of my heart.

Big hugs
Moki

[sllowe]

Hi Moke,

I hate that you are waiting - it's so much better to get in when issues are acting up.

Is your current doc who's looking to get you in w/another willing to assess you and provide a report on what is currently happening? And, send the report to the new doc?

Nice to see you, Moki. YOu are missed :(
-Shell

[ccorina]

Moki,

Just wanted to say hi from Canada.  I'm in Saskatchewan, so I can sympathize with you on the slowness of the system!  I was told an MRI here would take one year!  Crazy....

Hope you have better luck with doctors than I have!

Corina

[Guitar_grrrl]

Ooohh, good luck, Moki!  Big hugs to you...

[mokibear]

Thanks, that is sweet of you. I hope too that they get to the bottom of this and fast but in Canada, things tend to move pretty slowly. lol  It's been a month now since I've been able to speak normal and it's getting really old.  I probably won't shut up for a month once it's back though. lol

Hugs
Moki

[michelleric]

(((Moki))),
I am sorry things are not going well and your voice is nill.  I do hope they will get to the root of the problem and fast.
Michelle

[mokibear]

Hey Lulu, my voice is now a whisper with the odd normal sound coming out once every 8-10 sentences. So basically it's worse then it was. At least with just the whisper, it's easier to understand me when I speak. The other was really hard for anyone to understand me as the constant up and down of my voice was throwing them.

I called the doc's office and spoke to the nurse. They are working on getting me a new neuro and he has a couple that he's looking at and has sent on my info and is waiting to hear back to see what they think and who would be willing to take me on. The nurse does think this is some type of dyphonia as years ago when I was having a lot of voice issues, I had gone to a specialist who ended up doing surgery as I had a cyst on the vocal chord and he thought that was the problem.

Long story short, it wasn't the problem and he could find nothing else wrong so the nurse is figuring that there is no point going that route again until I see a neuro and get their take on it.

So I'm waiting once again. She had no idea how long it will take to get me in somewhere. I'll let you know when I find out.

Hugs
Moki

[Lulu54]

moki, Did you call?  Or are you doing better?  -Lu

[anon07072023]

Alex,

That's exactly what I was talking about in my post that my partner has.
It's called Spasmodic dysphonia or laryngeal dystonia.  
You can have dystonia in multiple areas on your body.

-Kelly

[mokibear]

As always DJ, you are full of love and support, thank you so much dear friend.

I have no neuro at the moment, I'm waiting for my family doc to find me a new one. But I will keep an eye on things and if it isn't any better by the start of the week, I'll call the doc and see if I can't get them moving on things.

I too am thankful for everyone here. I've always felt the caring that we all have for each other and it is such a wonderful thing.

Sending you special hugs right back
Moki

[ShadowsSister]

Sweetie, You need to pay attention to your voice, this sounds like you are having spasms in your throat area. If you notice your voice fading in and out please call your Neuro. I don't want to scare you, but I have these spasms and it is why I have to have a trache tube..
Never be sorry for posting what is going on with you, how else would we know you need extra support or hugs...We are all here for each other.. and I am so thankful for that...
Please take care, rest, get rid of the stress, and be kind to yourself.. Please
Sending you special hugs {{{{{~!~}}}}} DJ

[mokibear]

Jumpin, I guess I'll have to call my family doc on Monday and ask him what he thinks. I'm so sick and tired of going to specialists and then have them shake their heads and say they don''t know. I think my problem right now is that I don't know if this is all part of everything else that is going on or something different. Thanks for the advice though.

Alex, I'm in Canada although at times I wish I could go to the states and maybe I'd get somewhere. Everyone I've seen has this perfect little box I'm to fit into. Apparently they don't get that I'm not a box. lol Thanks for the reply.

Pam, I'm a limbolander and have been for a long time but my journey to find out what is wrong started a little over 5 years ago. I've been with this forum for over 3 years now as the wonderful people here are all that has kept me relatively sane. Thank you for sharing your experience with me. I've had voice problems for years now and the throat specialist I saw couldn't figure out what was happening. I thought I had experienced everything that could go wrong with my voice and speech but I guess I was wrong. lol

Hugs
Moki  

[drsdonthelp]

I am not dx with ms, still in limbo, but, I am going through a "flare" with left hand tremor and muscle twitching in left shoulder blade/upper back for a month. I also had slurred speech that comes on once a year lasting up to 2 weeks and lightheadedness that lasted for 8 months.
Sorry I don't have answers but I thought I'd share my experiences,, I am set up for an Evoked potential test in Feb. All MRI's are clear and other tests have been ruled out.
I do have Graves Disease, and the only time I had a problem with my voice, being hoarse was after I had RAI to treat my hyperthyroid , I went hypo and my voice was deep and raspy.
Are you dx. with ms or are you in limbo??
take care,

Pam

[HVAC]

I am not a Doctor and not playing one. It could be Neurologic, like what Diane Rehm, a Radio host, has called Spasmodic Dysphonia or something similar. A friend of mine has it to, she saw a specialist at Duke. Diane went to Philadelphia?  

Alex

[jumpinjiminy]

Have you thought of seeing an ENT that specializes in diagnosing and treating vocal issues? Some of them can do tests for nerve function. They also handle thyroid and parathyroid problems. Look for a specialist in a specialty rehab center. Often times, they have the new equipment needed to thoroughly examine and diagnose voice problems.

I'm talking about a rehab center than handles everything - especially neurological, like stroke and traumatic brain injury patients.

I was having some trouble with my voice, throat tightness and spasms off and on with the last flare up. I checked into what it could be and was able to find a place that could diagnose any of the possibilities and that's what I uncovered. Unfortunately, they never got back to me on the appointment, and my GP didn't know what tests to order, so I sort of dropped the ball on it. Too many other things going on and it went away eventually.

Now I just get throat tightness and my voice gets a little deeper with a flare up, but have since been diagnosed with autoimmune thyroid too. I'm just letting it ride out for now and working on the vision problems instead.