Pseudo Bulbar palsy

[jamiem]

I have been diagnosed with Pseudo Bulbar Palsy in Feb 12 with negative EMG involvement. I desperately need medicare as I am having problems swallowing, breathing, and speaking. I will have a second EMG on Aug 23 and my insurance with my previous employer will end on August 31. I do not know how I will afford Cobra at $1200 a month without my income. My husband is self employed and I am virtually uninsurable. My Dr. refuses to give me an ALS diagnosis at this point. I value each of you as I have tried to be active in the forum for several months. Any thoughts on this would be appreciated.

 

[edwards5257]

Yes, you have been active, I hope some PALS can give you some insight.

 

[CathyP]

Have you been to an ALS specialist yet? Sorry I don't have any words of wisdom. My ALS was limb onset with a "dirty" EMG. Hopefully others with bulbar onset will see this and be able to help you.

 

[HelenL]

I don't think you can get ALS diagnosis without EMG being "dirty"? Having said that, I'd look into changing to a different doc.

 

[ltbeauti]

You can get an ALS diagnosed without dirty EMG. My father was diagnosed with pseudo bulbar palsy in the early 80's. He passed of a heart attack 17 years later. I think that it was breathing issues related to ALS. He went mayo clinic for a week After his legs became weak and he had balance problems. They said that the closest thing to what he had was ALS. But his EMG was ok.
My sister and I have developed the PBP symptoms and after 5 years I too have balance and leg weakness. My sister has no balance problems , just general progressing limb weakness an all the PBP symptoms. All 3 of us have swallowing difficulties.
I went to an ALS specialist at Duke (where my sis was going, and after a while he noticed the legs were getting weaker and some in hands and a some of both UMn and LMN symptoms. My first EMG was clean. I never had another one. My sister(diagnosed 2 years b4 me) had had 3 or 4 clean. We were finally given an ALS diagnosed.
I think that going to a specialized ALS multidisciplinary clinic would be they way to go if you can. ALS can have slow progressing forms with only PBP symptoms at first.

Good luck to you. I know that an ALS diagnosed. Would be very beneficial to you. If you want to find the nearest ALS clinic, I am sure that someone else ca shed some light. A lot of good peeps on this forum

 

[jamiem]

Thank you for your post guys. It is very bazaar for me not to have an ALS diagnosis. I go to the best ALS Clinic in Dallas seeing a top specialist there, Dr. Heisman. My mother died of ALS at age 52, my aunt died at age 60 of bulbar ALS. My PCP has me on FMLA with a ALS diagnosis but the Dr. Heisman will not substantiate it. We will see how it goes on Aug 23 when I have the second EMG. Hugs to all of you.

 

[jamiem]

Wow guys my post went to moderation. Wait for it and please continue to give me ideas.

 

[jellis86]

Hello Jamiem...
Can I ask what your initial symptoms were for Pseudo Baulpar Palsy?
I have been affilcted with slurred/lispy speech for almost 8 months now. I also have emotional lability, especially sad/crying issues. I have had to change my eating habits too as food is very difficult to move around in my mouth while chewing.
Midday my speech is at it's best....only sound half drunk. But early and late in the day it's almost unintelligible. My tongue is almost always tingling (about 90% of the time) and doesn't move as freely as it once did. I also have the issue of involuntarily clamping my teeth down onto my tongue after sneezing. Sometimes I will wake up during the night and either be chewing my tongue or cheek, although I can control this by sleeping with a mouth gaurd in place.
It is starting to affect my work, I am a service employee, TSA at the airport...don't judge me based on that...LOL... and deal with the public on a daily basis. People have me repeat myself and sometimes just sort of look at me strangly. I do have a letter from my neurologist stating about my speech issues but also stating that the cause remains unknown.
I realize that my speech issues are chicken feed compared to yours and others on here with very pressing medical issues.
I hope eveyone has a great weekend!

 

[sunewun]

Hey Jamie, I have been thinking of you and hope this next appt. will serve you better than the last. I am still waiting for August 16. My sis Barb will be here Tuesday.. Can't wait. Best to you and you are in my prayers. sherry

 

[jamiem]

Oh Sherry, tell Barbara hi, and I hope it is cooler than in Texas. Aren't we lucky to have our sisters.

 

[jamiem]

jellies86l in November-December of last year I couldn't finish my sentences.. Then my speech began to slur. Like you by 5:00 nobody can understand me, at noon midday if people focus they can understand me. My tongue is always coated and never works well. I eat very little now.And listen I don't judge anyone. I am still trying to beat out a living as a psychotherapist with a speech problem ( sound drunk all the time.)
Keep me posted on your symptoms.

 

[jellis86]

I went to my GP 2 days ago for reasons other than my speech, a simple prescription update,...but he examined me and asked how everything is going. He then confirmed the results of all the tests so far and said that a lot of bad things have been eliminated...MS, MG, stroke, tumor, etc.
I told him my tongue always feels like I just put a 9 volt battery to the tip.....some of you will get that! He said it's definitely a nerve to muscle issue, but he has no ideas.He did make another appointment with ENT to check my vocal cords again and for chronic tonsillitis. He said that in no way does he feel that my tonsils are connected to my speech issue, but he wants ENT to look again anyway and check for irritation of the vocal folds..
So it's more waiting, 2 weeks, and then the Neuro a day after that. At least I can confirm that it i still just speech and nothing new.

 

[notme]

Wow, with that family history--your doc sounds like he has a screw loose to me. I'd simply find a new doctor!