als bulbar symptoms

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janicebuf

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hi, i hope someone out there has an answer. als runs in our family. my brother who is 45 has had some bulbar problems. both of his cheeks have some loss of sensation and he claims he can't say his 's's, although we don't notice it, nor can he 'spit'. when asked to blow up a balloon he can't because of loss of sensation in his cheeks. he presently doesn't have any problems swallowing, breathing, etc. and of course the mri didn't show anything. obviously his next step is an emg in 2 weeks. this has been goin on for a couple of months and has not progressed. we are cofused as no one in our family has ever had bulbar symptoms. would anyone know if these symptoms are typical bulbar (als) symptoms. my thanks for your respnse!
 

dana

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My dad is 51. THe first symptoms my dad noticed with himself was his speech. It started slowly with him saying he could not say his s's. He said he was slurring them and it sounded like he was drunk. None of us noticed. We thought that it might be from his over bite. It then began to progress to where the family noticed too. At first it was a little comical. We would tell him to say the words slowly, and then he was able to say the words correctly. We started thinking it was from stress. Then, a buddy he golfed with was diagnosed with brain cancer. That kind of got our ball rolling to have my dad checked out. All tests and MRI's came back normal. Once again, we thought it was stress. My dad started taking more time off work, but the speech continued to get worse. Finally, his neurologist who could find nothing wrong with him decided to send him to the Mayo Clinic. They diagnosed him with early signs of ALS. They still have not given us a definite diagnosis, but this is what they are leaning towards. (He also has Lymes) My dad's muscles in his face and everywhere else are fine so far. Just his speech that is really bad, and he has had a few choking episodes. We think the form of ALS he has is bulbar. I don't know if any of this helps, but at least now everyone knows my story. =)
 

janicebuf

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bulbar symptoms

hi, how long has this been going on for? (from the time he noticed he couldn't say his s's until now) did he have the emg test? thanks so much!
 

Granny

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Hi Janicebuf,
Welcome to the forum.
I was diagnosed in April 2004 with the bulbar type of ALS. I started noticing in the summer of 03 that there were some words I could not say properly. No one else noticed. In October I had a CAT scan, etc done and nothing showed, so we thought maybe I needed new dentures. Other people could still not notice my slurring of words. About two weeks before Christmas my tongue started "twitching" all around the outside. It also felt thick. I went to an neurologist in January, who thought it might be ALS. A MRI was negative, and so was an EMG. I was sent to another neurologist who made the diagnosis of ALS, and said I might not have a positive EMG for awhile. By this time, my speech was more noticeable. I did not have anything wrong with my cheeks at that time, just my tongue. Your brother sounds a bit different, so hopefully it is not ALS. If you need this forum, there are lots of great people here to help or listen.
 

dana

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My dad's symptoms started around March or April of 04. That is when he started to notice not being able to say his s's. He did not start going to all of the doctors until July of 04. In March of 05 was when he was told about ALS from the Mayo Clinic. Even now though, they are unable to give a for sure diagnosis (which is so frustrating). Is the emg when they do all the shock stuff? If so, that was done in March at the Mayo and probably a few months before at the local neurologist. He just started taking Rocephin in June for the lymes disease, and we really think it has sped up his speech a little bit. He was also getting some cramping in his hands which has stopped since taking the medicine.
Dana
 

Meg1

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Janice -- I was diagnosed with a very slowly progressing bulbar ALS in the summer of 2003. To answer your questions, the slurred speech that no one else notices and the inability to spit or blow up a balloon sound very familiar. The loss of sensation in the cheeks does not. Like your brother, I have had no swallowing problems, but from time to time I can't get my tongue or cheek out of the way fast enough and I bite down on them.
 

rcharlton

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Wow - that's so freaky...all these things that were going on with me the past few months all make sense now.

I am in the same boat as Janice's brother - I was diagnosed with "probable" ALS a few weeks ago. Of course initially I was in complete denial but then started looking into the symptoms and started finding that I had many more symptoms than were discussed with my neurologist.

It did seem like there was a time a while ago that I kept biting my tongue and I could never understand why until I read Meg's post.

Another thing was drooling - I noticed I was drooling a lot in bed - which seemed odd - sure enough - increased saliva production is an ALS symptom.

From my limited knowledge - I think it's tough to say what the "typical" symptoms are for ALS - it seems to manifest itself differently in each person.



I have had numbness in my chin - but that has gone away.
 

janicebuf

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thanks for your response all of you! you are amazingly brave people and i am awed by that.
as i mentioned, i lost many family members to this disease (14 at last count) and of course this is the first thing we are all thinking of with my brother. we don't know of anyone in our family with als starting in the bulbar area but this could be a first! it's so sad for as we are just getting over the loss of my 41 year old sister to breast cancer. sometimes i wonder why God allows this to happen. of course i fear from my 2 children who are only 9 and 11 and the light of my life and of course, my husbands. i wish i could be more positive and thank God that we have my brother this long but i just get so sad and forget all the blessings i have had in my life. i jokingly say to my friends, 'sure i have faith in God...as long as things go my way:)' well, any other input would be so appreciated and to the last post, i have never heard of numbness in an area and then it going away, i thought once you lost the feeling, that's it, it's gone.

also to meg; how to they come to terms that slow moving?

thanks guys! janice
 

Meg1

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From janicebuf:
also to meg; how to they come to terms that slow moving?<end quote>

My official diagnosis is "bulbar ALS." The "slow moving" is just the way my neurologist described it at my last appointment and reflects the strange fact that I've had bulbar symptoms since 1999, was formally diagnosed over two years ago and still usually speak fairly clearly.
 

dana

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Meg1-
Do you have any other ALS symptoms other than your speech (which sounds like is still pretty good)?
Dana
 

Meg1

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Meg1-
Do you have any other ALS symptoms other than your speech (which sounds like is still pretty good)?
Dana<end quote>

Oh, yes--pathologically brisk reflexes (including hoffman's and jaw-jerk but no babinski), clonus, leg cramps and slight weakness in one arm.
 
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