ALS, weak voice, staring, difficulty walking

[mom2three]

I am at a loss and am trying to figure out where to go from here. About 4 years ago I noticed that I have generalized weakness, mostly in the arms and legs. My voice has gone from being very strong to bearly ledgible. The longer I speak, the less able I am to keep sound from coming out. I almost feel like I am running a marathon just to get the words out . My lungs, heart, brain have all been cleared after many tests. Though the Heart doctor said I had orthostatic intolerance. From the ENT and Speech evaluation they found mild vocal fold bowing. I am told I have dysarthia, I slur my words, excessive saliva, and lingual tremoring. They say my voice is weak, hoarse and breathy. The ENT thought it was Myastenia Gravis, but that was ruled out. I have fascilations in my face and arms that my neurologist says is a sign of a neuromuscular disorder, though he does not seem to know which one (time to find a new neurologist). When I am at rest I stare and my limbs (especially my hands) freeze into these very odd stiff and ridgid positions. I am constantly falling, dragging my feet when I walk. I went from being a 90 wpm typist to bearly being able to type. If my children walk in front of me I cannot seem to recoup my steps which usually results in me falling or crashing into something. My facical movements are very stiff and on somedays I almost feel like I am robotic. Any ideas or can you please lead me in the right direction?

 

[BethU]

mom2three, I'm so sorry you have having these difficult problems. I have no medical background at all, so please take this with a huge grain of salt. Your constant falls, and your limbs "freezing" into odd positions sound to me a little like something I was mis-diagnosed with a year or so ago, progressive supranuclear palsy, which I had never heard of. This is extremely rare, and the odds are very great that you do not have this. In fact, when the neuro diagnosed me with it, he said he didn't really believe it, because he never expected to see a case of it in his lifetime.

It also sounds to me like Myasthenia Gravis, which is difficult to diagnose. Even though they have ruled that out, I would keep it in mind, as they are learning more about MG all the time. The falls and the stiff face might also indicate Parkinson's, which can be treated.

There are so many possibilities, only a neuro could sort them out. I'd suggest a second opinion.

My thoughts are with you. Hang in there. Finding the right answer is the hardest part of these neuro diseases.

 

[mom2three]

Wow

All I can say is WOW, thank you for that tip. It does sound like progressive supranuclear palsy since I also have eye problems, difficulty reading and memory loss that noone seems to be able to figure out. I did get a recommendation of a very good Neurologist and will hopefully get some answers. Thank you!

 

[rose]

mom2three,

I believe you will find some answers.

We understand how frustrating and scary this must be for you, but, just keep at it. Maybe you can take some comfort in not having a "typical presentation" of anything. Because of this, you should hold the interest of the better doctors, as they like a challenge, they look forward to solving mysteries.

BTW, one of the tests my neuro did, that BethU later said was to test for the supranuclear palsy, was to have me look upward for an extended period of time, to see if I could hold a sustained gaze. I'm not suggesting you try this on you own, its like trying to test your own reflexes or something, I'm just telling you this, because during exams, so often we don't know what the doctor is trying to accomplish, not that many explanations are given, and it would give you information as to if the doctors have looked for this as a cause so far with you, if this has been part of any of your exams.

I'm glad you found this forum, and wish you all the best it finding the cause, and getting treatment that will help you regain yourself back.

good luck to you, and keep us posted.

 

[BethU]

mom2three ... I've had difficulty reading, too. Still do, and it keeps getting worse. I get double vision when I hold a book close (I'm near-sighted). I think that's why my neuro made the call originally.

I believe some neuros treat PSP with Parkinson's drugs ... the dopamine type. It has a much longer life-expectancy than ALS, so that is good.

Please let us know what's happening, and what tests they perform, etc.

Blessings.

 

[mom2three]

Thank you

I appreciate your support. I have an appt with a doctor from NYU this week so I am hoping for some answers. I will keep you posted and let you know.