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

[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