Pseudo bulbar palsy?

[stanlek1]

Rose,

I am in West Virginia, and recently was told by Doctors at Univ. of VA that I may have ALS. Now, they are calling it pseduo bulbar palsy.

I have been doing tons of research, and I haven't seen anything that says the onset is sudden. I was absolutely fine in October of 2010. Got very sick with upper respiratory and sinus infections. When I got better, my speech was affected. dysarthria, dyspahsia.
I have been back and forth to UVA several times, speech and pulmonary evals, and have a follow up appt. on May 23rd with Dr. at neurology clinic.

So, Not sure if I have ALS or not, but sure could use some support. I am a teacher, and losing speech is a horror show. I am still working, but not surehow long.

Thanks for ANY help!

 

[stanlek1]

Re: Misdiagnosing ALS

I was recently told i have pseduobulbar palsy, and the doctor said you have ALS. I am not sure at all that that is correct, no other symptoms but dysarthria and dyshphasia. I am still in shock I think, and my husband as well. I am a teacher, and have had to begin using I Pad and I Phone for class.

Not sure which direction to go. I was fine until I got really sick October of 2010. Sinus and upper respiratory infections. When better, voice and swallowing issues. Really need to understand how ALS is CONFIRMED. Any help on this?

It is greatly appreciated!

 

[rcharlton]

Hi Stanlek1

Sorry to hear about your situation.

You posted this message under a sticky so it is unlikely anyone will see it.

I created a new thread for you so you will actually get some feedback.

I entitled it "pseudo bulbar palsy " as that is the term you used although I wonder if you meant progressive bulbar palsy.

There is another section devoted to progressive bulbar palsy you may also want to check out.

Take care

Richard

 

[notme]

HI

Your question: How is ALS confirmed...the short answer is--It's difficult. ALS is only diagnosed after all other possible causes of the symptoms have been ruled out.

EMG/NCV are done. MRIs' are done to rule out other causes of the symptoms. Sometimes a muscle biopsy is done, as is a spinal tap.

In Bulbar ALS, you'd have likely first noticed some slurring, that progressed. Swallowing liquids would likely be the first 'eating' difficulty.

the fact that your symptoms followed an infection, though, should be leading them to looking for other things. Some infections seem to set off auto-immune responses in some people and cause things like Gillian Barre Syndrome, which can have a very sudden onset of symptoms after an infection.

Pseudobulbar palsy is apparently supposed to cause emotional responses--are you having any of those kinds of symptoms?

I'd suggest you see a neuromuscular/motor neuron specialist. If there is ANY chance of ALS--I'd advise seeking out an ALS clinic. They are in every state, I believe. Look at the ALSA for more information.

Keep us posted on your progress

 

[BarryG]

Hi, sorry about what's happening to you and I know all about losing your voice. ALS onset is not sudden but it is often not noticed for a long time and an unrelated health event can cause a jump in symptoms.

I started having slurred speech in July 2007 and have been unable to speak intelligibly since mid 2008. Yes it is a horror show but you can still have a voice with all of the electronic speech devices now available.

Good luck and if I can answer questions just ask

Barry

 

[hopingforcure]

Yep Pseudo-bular palsy is a Upper Motor Neuron Symptom- Causing Jaw jerk, and emotion Lability. Maybe he mentioned that you have that, for it is a part of ALS.. Being a UMN symptom.

 

[rcharlton]

H4C - thanks for elucidating

 

[stanlek1]

Hi,

sorry it took me a while to get back. I have been diagnosed by an ALS specialist as pseudobulbar palsy! All the information is so overwhelming! Mine was so sudden as well, with no prior symptoms. In October, I got really sick at a statewide conference, upper respiratory,adn sinus. By January, no voice, trouble swallowing. No other symptoms. I am scheduled to go to the Mayo clinic June 24, fo r second opinion. Don't know what to do, but do know my husband and I are struggling with the communication issue! While I use I pad and I phone, and write lots of notes, we seem to easily misunderstand each other! On top of that, my brother died May 18th, after a two year fight with liver cancer. I am so overloaded, don't know what to do!

Any one else been diagnosed, or heard of the "pseudo" bulbar palsy?

Thanks!

 

[stanlek1]

Hi Barry,

I do not have any of the emotional symptoms, at least I don't think I do! Hard to tell with all the family stuff thats been happening. Are you still working? I am, and as a teacher, this has been a real adjustment in my classroom management style! I am unintelligibe now, and it has only been 8 months. Still eating, but difficult. Want to avoid the "tube", as long as possible.
Is there any hope out there?

 

[stanlek1]

H4C,

Thanks for reply. My actual diagnosis is pseudobulbar palsy. Dr. said not ALS? I am so confused now. My Dr. is suppossedly a national specialist on ALS. So, I am going to Mayo clinic in MN for (hopefully!) a definitive diagnosis. Has anyone heard that deep brain stimulation is helpful?

 

[stanlek1]

Thanks, going to Mayo clinic in MN. Have seen one of the best (or so been told) at UVA.

 

[notme]

Honestly, for that second opinion--there are multiple specialists a lot closer than Mayo. I'd suggest checking with the ALSA in your area and see their list of recommended specialists.

I'm sorry for your diagnosis! I used to teach high school--I couldn't imagine how I'd teach with no voice. I hope your 2nd opinion yields another answer. The "emotional liability" would cause things like crying over something that wouldn't have normally elicited that response. With all you've been dealing with in such a short time, I'd imagine EL would be difficult to distinguish!

But, pseudobulbar palsy, unless I'm mistaken, doesn't HAVE to mean ALS. Apparently, there is bulbar palsy and pseudobulbar palsy. One is UMN and the other LMN. There are some good posts in the archives here.

What tests have they done to diagnose you? Remember, it can ONLY be ALS after everything else is ruled out. Has Gullian-Barre been definitely ruled out?

 

[trfogey]

Honestly, for that second opinion--there are multiple specialists a lot closer than Mayo. I'd suggest checking with the ALSA in your area and see their list of recommended specialists.

Since stanlek1 is in West Virginia, I'd think Johns Hopkins in Baltimore would do just as well as Mayo. It also is a big ALS research center, so there would be plenty of opportunity for participating in trials.

But, pseudobulbar palsy, unless I'm mistaken, doesn't HAVE to mean ALS. Apparently, there is bulbar palsy and pseudobulbar palsy. One is UMN and the other LMN. There are some good posts in the archives here.

Bulbar palsy == LMN and pseudobulbar palsy == UMN, as I recall.

Also, for the original poster, are they sure that all of those infections last fall didn't cause some sort of brain infection or maybe even a small stroke?

 

[lizzie11957]

We have practically the same symptoms. In May of 2010 I had a serious upper respiratory and sinus infection. The soft pallette was extremely sore . After it cleared up with the help of some antibiotics, I noticed that my speech was slurring, but it came and went. In August the slurring returned and progressed to difficulty swallowing. My gp diagnosed pbp and sent me to a local neurologist who confirmed the diagnosed. Still not convinced, I went to Emory. Dr. Glass, an expert in the field, gave the same diagnosed after looking at my records and doing a NCT. I too am a teacher and plan to continue by using technology. Let me know how you're doing. Liz

 

[tammyg]

My dad passed of Bulbar Palsy in June 2009.Tomorrow will be 2 years and it hurts. I went from not knowing what ALS even was to knowing all about all the strains ect....My dad started in his thoat, thought he had a cold, we also thought he might have had a stroke. For 2 years he was misdianosed with Myasthenia Gravis.(When the brain tell your mouth what to say.Like a part of the road is mssing and can't follow through. He also got tested for Lyme disease. Not just one test but being exposed to Lyme now, and another blood test to see if he was exposed in the past. Two seperate blood test, taken at the same time. Dad started losing his voice and it just got worse and worse. Harder and harder to understand. He wrote alot of notes. Last year (I am 46 years old)I started losing my voice and was freaking out for several months thinking if this is what I got I don't want to know. But then I heard Ray Rice /Ravens had a throat infection, and I am also a smoker so I thought the worse. I did finially go to my E.N.T. Dr who knew my dad and my concerns. He put a scope down my throat and said from when I had a cold several months before , i had inflamation in my voice box being flaired up by acid reflux (i did not even know I had a problem with acid reflux) There is no test they can give you saying you have ALS. It more like ruling other stuff out.He had a spinal tap that ruled out like 350 other things. The difference between Bulbar Palsy and the Pseudo bulbar palsy is emotions. The Pseudo means you have a hard time controlling them, onsets of crying. I hope this helps you. Good Luck, I will be keeping you in y prayers. "Thank You for being a teacher it is the most important ( & underpaid) jobs in the world.