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olly

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now i'm not one for self pity but i'm not a" happy bunny" today:(, these bulbar symptoms are something else.
last night while as usual trying to eat my meal with all the dignity of a "cow chewing the cud":oops: i practically hit the ceiling howling in pain...............yes i bit my tongue,badly.
it all happend so quick that i dont know exactly what happened but my teeth/jaw just slammed shut like a vice and my brain was not quick enough to tell my tongue to move out of the way. i though i had bitten a chunk out of the left hand side.
then later on and today my tongue is tingling like mad and is very sore.
on top of this i have started having spasms in the right side of my face/mouth that are very distressing and leaves it feeling like i have had a stroke. also if i dont swallow regularly excess saliva goes to the back of my throat and i start choking.
i am used to the body symptoms but when its the bulbar areas it seems harder to deal with. i lost nearly 11/2 stone early on in the year not being able to chew and even though my weight has stabblized i can't put it back on again.
as i said i'm not a "happy bunny" so sorry for moaning on and thankyou for listening.
god bless
caroline
 

kevinw

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DX UMND/PLS
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So sorry to hear that you're not having a good day, I hope things start to get better. I do not want to even imagine the bulbar symptoms, fortunately they have not appeared for me at this point.

Again I am sorry to hear things are not so good.....and please don't think of it as "moaning"......we can just be a sounding board for venting.....I don't mind :)

Please take care
 

Gracie

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Caroline,
It does help too tell your friends when you are having a bad day and I am sorry today is yours, tommorrow will be someone else's and you will be the first to respond, I'm sure. Try rinsing your mouth out with 1/2 teaspoon of salt in warm water several times today. The mouth is the fastest healing part of our body. My husband does not have the bulgar symptoms too much only I have noticed an occassional lowering of his voice to a growl sometimes. God Bless you and I hope for you a better tommorrow!

Gracie
 

olly

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thankyou

thankyou kevin and gracie,i don't like to moan but i find the bulbar symptoms very distressing. i have been having some icecream to sooth my tongue but will try the salt water. i'll just have to be extra carefull chewing when i have the spasms.
hope you both are having a better day.
take care
caroline
 

Geo

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Now you have an idea what i go through . I have even bit the bottom of my tongue where it connects or there abouts, not fun . I have chomped the side of my tongue more than i can imagine and my cheeks even more ,like ive said take some food and put it between the cheek and teeth to puff out the cheeks (prefferably Bread) . Cant help on the tongue though . Sneezing and yawning also the mouth wants to slam shut fast and we cant get the job done .When i sneeze lots of saliva shoots out and id better be holding onto something or i'll be thrown off balance and fall . Take Your Time And Move Slow . We have a good day and we think we can do things we cant and our body says ,SEE . Sorry you had these symptoms Olly . Geo
 

sral

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Hi Caroline,

I'm sorry to hear about your new development.

My mom, like Geo, started with bulbar and it has not been fun. Chewing the insides of her cheeks and not being able to eat as usual. Seeing that it was their first symptom, whether they liked it or not they had to get use to it and learn the tricks to handle it.

I hope in time, it will get better!

By the way, please moan away because we are here to support you.
 

olly

Extremely helpful member
Joined
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geo/sral

thankyou very much for your help and support.
i had just slight swallowing and difficulty chewing before but the nasty spasms started a few weeks ago. in your boby is one thing but in your face is so much more distressing.
geo, i can say i do know what you go through now, this is all new to me but you have had to deal with the bulbar stuff alot longer and biting the tongue this bad once is enough,i can't imagine it a regular occurance.you have my sympathies.
i'll try the ideas you mentioned when my tongue is better
take good care
caroline:|
 

olly

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geo.

i have 2 questions for you.
1 i have always read umn does not show on a emg. someone said umn in the bulbar regions does and i am confused. did your emg show your umn involvement in the bulbar?
2 if i take extra baclofen would it ease the facial spasms? i read somewhere baclofen works from the spinal level and not brain stem. so would i need a different type of muscle relaxant to act on the bulbar area?
sorry to put you on the spot lol:-D
caroline
 

Geo

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Messages
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DX UMND/PLS
Diagnosis
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Yap The answer to #1 is yes it did show on the EMG . My Neuro said at the last EMG, im not going to do the Tongue as we already know that is affected .At that time he thaught PBP Psuedo Bulbar Palsey. He later changed that to PLS . The Answer to # 2 is Baclofen relaxed my Diaphram so much it almost ended my life . I had to force myself to breath ,so no Baclofen for me .Connie ran me to Emergency one Morning ,they had to carry me into and put me on a Gurney . I Take nothing as it makes me feel out of control (rubbery).Geo
 

Gracie

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Baclofen

Geo
I am interested in your post on Baclofen and it relaxing your diaphram. How much Baclofen and what mg did you take a day? My husband takes two 10mg in the am and one 10 mg at noon and supper then two 10 mgs a bedtime. The neuro said this is a low dose but we have nothing to compare it too. Thanks for your help, Gracie.
 

cukita99

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geo, balcofen did the same to me so i dont take it. i also bite my cheecks. i also have to b holding on to something when i sneeze.
 

Geo

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Well Grace everyone is different im thinking back now and i think it was 10mg ,very small pill nothing the first day but second day was hell .I really thaught i was going out ,started gasping for air ,had to consentrate and breath deep . I then was put on Zanaflex or Tizanadine which i took 1/2 of a 5mg pill tiny and i felt rubbery and had to lay down all the time , i felt if i try to walk i'll fall . So i chose to have nothing Thats as close to normal as i can get .I dont like the feeling of being out of Control so to speak . But you have to evaluate these things for yourself . Geo
 

Geo

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Messages
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DX UMND/PLS
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You know when i would drink with the guys i had an ability to know when to stop .When i felt i was losing control of my faculties i would just stop and leave . Geo
 

sral

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Geo,

You are lucky that the stiffness subsided and is not as bad as it use to be seeing that you can't take any meds for it.
 

Gracie

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Geo, Thanks for your help, you are right it is very individual and some people react differently to different drugs. My husband has been taking the Baclofen for about a year and a half now and it does seem to help him so far but I don't know if he will have any problems if the dosage is increased. We will certainly now be aware that if he shows any similar problems that it could be the Baclofen. This is unchartered territory with PLS and with every new symptom you automaticaly think it is progression when maybe it could be a side effect from a drug. Thanks again I value your input. Gracie
 
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