PBP after dental visit?

[Carol]

My 89 year old mother, who was in great health, went to the dentist and had a novocaine injection where the jaws meet. She noticed her speech slowing immediately afterward and In 7 months, she has progressed to writing notes and needing a PEG.

I found two other women on a PBP forum who experienced the same thing. One was 57, the other 65. I've corresponded with the 65 year old. She had 5 injections, all in the same area as my mother's; her speech slurred immediately afterward and kept progressing. She is now on a PEG. The 57 year old is also on a feeding tube and has difficulty walking, etc.

We have been to 5 doctors, including a research neurologist, and no one agrees on a diagnosis for my mother. She's had a CT, MRI, blood test for myasthenia gravis, blood test and CTs for a rare cancer/tumors. All have come out normal.

The (rude and confrontational) research neurologist said Cerebellar Atrophy/Ataxia--this diagnosis was given before I had even finished filling out the paperwork and before he read anything sent by the referring dr. Her neurologist totally disagrees.

The neuro-radiologist who conducted the swallow test said he suspected Bulbar Palsy.
Her neurologist said he suspected ALS but said couldn't prove it, so he did NCV and EMG tests. They came out normal.

Every doctor has said there is no connection with the novocaine injection, but after checking my old college biology book I see the lingual nerve follows the curve of the jawline... The 65 year-old and I believe the injections might have started a chain reaction.

 

[Al]

Hi Carol. Sorry about your mom. One of my Neuro's thinks there are genetic markers in us that are triggered into MND's by either toxins or some other reason. This could explain your mom and the other ladies maladies. More research needs to be done on the causes of ALS.

 

[salma]

carol & AL

Hi Carol,
sorry about your mom. may be,some connection exist . But more research need to be on causes of ALS.
Al , i want to ask you that my father is rapidly progressing , he takes Rilutek but no proper benefits.Kindly, Can you give me some other ways to manage or slow this disease? we are too worried about him. pls. thank you so much.....

 

[Carol]

Salma & Al

Salma, I'm so sorry to hear about your dad. My mother is getting worse by the week or faster, and I know how frustrating it is not to be able to DO something. I wish you the best.

Al, I wondered if you could tell me something about these EMG/NCV tests. I didn't want to ask in front of my mother, but if they show up normal now and the dr. says she doesn't have ALS, does that mean just "right now"? Or do they indicate she probably won't be developing ALS period?

Thanks for being here in this forum. Sometimes even if there is no answer, it helps to vent and get the question out.

 

[mary ann]

What is PBP?

Hello Carol,
I am wondering what PBP is. I have a brother with a similar experience as your Mother. He has been newly diagosed with probable ALS after dental work. Please let me know more about this.
Thanks, Mary Ann

 

[Al]

Hi Carol and Salma. Somehow I missed your posts. I apologise. Some of the people are taking Vitamin C,Vitamin E and CoQ10 and Creatine. Not sure if it helps but doesn't appear to hurt. A normal EMG/NCV test doesn't mean that 6 months down the road something won't show up.
Welcome Mary Ann but sorry you have to be here. PBP is Progressive Bulbar Palsy. There is a Thread on it on site here for more information and you can do a search as well.

 

[Blackbird_29]

Hi,
I have PBP. My first signs were after 2 visits to dentist for root canal. I don't know what injections were but months later in 2 re visits he never charged me! Guilty Concious?
I also had a screaming argument with husband and I cried so much I couldn't talk. Afterwards speech was worse!

 

[Ellen]

Dental Work

I, too, had dental work and had several shots in upper area of mouth. Dentist was doing a crown. After that, I stopped at a store and almost passed out. It never quit hurting so a few months after, I was sick with fever and pain which resulted in a root canal by another person. I asked my dentist, and he said maybe a nerve was stirred up when he did the work. Have always had throat problems since 1965 and had four biopsies of vocal cords, the last being in November 2002 after the root canal. Two months after that biopsy, my lip pulled down for a week (thought I was getting Bells Palsy, but it stopped), then I noticed slurring of words. Thought I had a stroke but MRI said No. I have been to three different neurologists, and have had all the tests: three EMG's, Spinal tap, two MRIs, other scans, and many, many blood tests since 2004. December 2004, I was told I would not speak a word in six months, which did not happen, but my speech is not good. And, yes, some days are worse than others. I refused Rilutek. Some people can understand me if they listen carefully--being on phone is worse. I had all symptoms of Bulbar Palsy, and now neurologist said this year that it is ALS. Just in the last two months, my right hand is a lot weaker. Cannot fasten jewelry, open jars, and lift arms up without them hurting. I am a retired teacher so I talked a lot over the years, and I have always been sick with swollen glands and swollen throat. This is why they could not decide on a diagnosis for so long. There is no test to prove it. You just get worse and then they know. Stress does make me worse. I had never heard of ALS before all this. Neurologist always asks if I can swallow water, and the answer is yes. I never eat out anymore, and my life has sure changed. I drive and I walk in heels but wonder when that will stop. My mother died during all this, and my health probably hurt hers. Weight has stayed about the same, but the thought of food does not appeal to me, and I make myself have meals. I have no family close by. I live in Ohio. And, yes, I went to Cleveland Clinic a year ago, and that neurologist thought I was atypical for ALS even though I had Bulbar symptoms. Now with the weakness in fingers and hands, I have consoled myself that with each day, I will be getting worse. Like all of you, I keep trying to look back at things that might have caused this, and I will never know.

 

[Carol]

Hi Mary Ann,

I'm so sorry to hear about your brother. My mother's speech and swallowing deteriorated about three times faster than the 65 year-old's, but so far her only problem is that her tongue won't work--no muscle weakness. I wish your brother the best.

It's been almost 10 months now with even more tests, and we still have no diagnosis. She lost 24 pounds in the six weeks before she finally agreed to get a PEG feeding tube (lost over 40 altogether), and it was a mistake to wait that long. Too hard to put the weight back on and needs a new wardrobe.

I did write online to the American Dental Association asking if they have any records of people having this problem after a novocaine injection and never got an answer. With all these posts, it certainly seems like something they should be looking into.

A friend Googled "adverse reactions to novocaine", and that was certainly eye-opening. On one forum, none of the people posting had the speech/swallow problem, but they had symptoms such as burning tongue, extreme jaw pain, lack of ability to taste--some still lasting over a year. It wasn't always after a visit to the dentist--some had been to maxofacial surgeons... There was talk of coming up with a class action lawsuit. There's certainly a lot more to dentistry and side effects than I ever knew...