Old 07-16-2013, 03:15 PM #1 (permalink)
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Default Diagnoses with PBP 6/7/13

Hi all- Its been a long journey...In December 2011 I had a crown redone for the third time on my back right upper molar. I noticed heaviness in that area of my mouth right after and started to slur my speech in the evening. My mid March the slurring was much more prominent and my colleague thought I should see an ENT to get it checked out.(I also had difficulty swallowing thing liquids) The ENT noted that my soft palate wasn't moving much but everything else looked normal. He ordered a brain MRI and appointment with a Speech pathologist. The brain MRI was normal and the Speech Path said she thought I needed to see a neurologist. I went to neurologist and he checked me and said I might have MG and asked me if I wanted to try Mestinon to see if it improved my symptoms. I tried the Mestinon and it gave me MG symptoms! My speech was much worse and I really difficulty swallowing and my muscles everywhere felt weak. I stopped the drug and the symptoms went away. In june 2012 I went to Mayo and all blood work, CSF tests, swallow study, and Emg were normal. They were not able to confirm a diagnosis. My speech continued to get more difficult to understand and I noticed fasicualarions in my tongue and a jaw jerk. I had a repeat MRI and emg in Sept 2012. The Emg was "normal" except for the fibrillations and fasiculations in the tongue. He also noted that I did not feel the deep needle stick in the right masseter and orbicularis oris muscle. A colleague suggested that I remove the crowned tooth from my mouth and that I might be having some kind of reaction to the crown material. I had the tooth pulled Sept 25 2012 and I had no pain from the extraction. This is when I realized that the weird pressure feeling I had been having over my right cheek and gum was actually a numb area. I have no feeling in the right upper inside portion of my mouth from eye tooth back which goes up my right check to lower eye lid.. To further complicate my symptoms I had a lower jaw surgery in 1985 that already left me with numbness in my lower lip and chin. I am a Certified Registered Nurse Anesthetist (CRNA)and had been working throughout the time my speech was getting worse. I would have other staff talk to my patients for me. Once they were anesthetized there is minimal speaking involved. In October 2012 I went out on Medical disability as I didn't feel it was safe to not be able to communicate to others if I had a problem and needed assistance. Since October my speech has not improved and my tongue is weak and I cannot move food in my mouth adequately so I now eat with chopsticks. Liquids continue to be a problem and I have increased saliva. I went to University of Michigan for a second opinion July 2013. They repeated my EMG and found it to be a mildly abnormal exam. There is electrodiagnostic evidence of chronic reinnervation changes in the tongue and right masseter muscle. no evidence of active denervation of a polyneuorapathy. They said they think I have progressive bulbar palsy. I still think this has something to do with my repeated dental work on my right upper back molar. The crown had to be done 3 times before it was properly done. I find it hard to believe that my symptoms aren't from the dental procedure and damage done to those nerves. I continue to have no other symptoms except in my speech and swallowing/eating. Does progressive bulbar palsy only affect one side of the mouth and cause numbness on one side? I rarely speak because of text to speech app on my phone is easier to understand. Thank God for technology. This is definitely a difficult diagnosis to deal with. I keep praying that they are wrong and it is rare damage from a dental procedure. I have found many helpful posts here and hope to be able to be help others. I am going to U of M tomorrow for lung function tests and for an evaluation for speech aids by their speech pathologist. My husband and I are determined to fight this battle. Thanks for your thoughts. God Bless All of you!
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Old 07-16-2013, 06:22 PM #2 (permalink)
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Default Re: Diagnoses with PBP 6/7/13

Hi Gerri welcome and sorry for what brings you here. I am sorry you had to leave your job but thank you for having the courage to put your patients first. It must have been very hard.

I do not have any experience to answer your questions. I would wonder the same things as you. Am I correct you only have one opinion that gave you the PBP label? The first was different even after eliminating the MG? I would seek another opinion I am not usually an advocate of third opinions if the first two agree but it sounds like this is not the case for you?

Take care
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Old 07-16-2013, 08:28 PM #3 (permalink)
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Default Re: Diagnoses with PBP 6/7/13

Thank you for your kind words Nikki. To leave a job that I loved was very difficult. My neuro in Lansing also thought that I had PBP so my second opinion was at the u of m. I am sorry to hear that you carry the gene and pray that they can find a cure. Thank you again for your reply.
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Old 07-16-2013, 09:02 PM #4 (permalink)
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Default Re: Diagnoses with PBP 6/7/13

Sorry I misunderstood. I am lucky to be asymptomatic so far thanks for your kindness. Best of luck with your appointments tomorrow. Keep us posted
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Old 07-19-2013, 03:55 PM #5 (permalink)
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Default Re: Diagnoses with PBP 6/7/13

Well went to U of Michigan ALS clinic and the neuro there doesn't know what I have going on. At the present he doesn't feel it's ALS or PBP but wants to look at all of my MRI's and medical and dental records. I was so impressed with their organized and compassionate team! They want to follow me and see me in three months. So I am going to keep on keeping on!
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