Pain in BPB

[Bluenadski]

Hi,

hope all are well tonight!

Can anyone advise - does pain generally occur in the throat/shoulder/neck area of bulbar palsy?

I've asked so many people and from what I can gather - this is generally not the case.
My mother is suffering from acute pain in these regions - so much its affecting her sleep.

Her neuro - (who I dont think understands a word she says, because she has a very thick accent on top of her dysarthria) - seems to think the pain is all in her head!

Can anyone advise if they have encountered/experienced a similar situation?

Thank you all
xxx

[musicsmiles]

Hello,
My Husband has PBP and he does have some cramping. Specialist have prescribed pain meds for it.

Musicsmiles

[Bluenadski]

Thank you for you reply..

My mother is complaining of aches...
I was very graphic with her - desribed pains she may be feeling in pbp - but she insisted she is still feeling acute pains in her neck and has done for the last 5 months...
After questioning - the neuro says pain is almost no existant with this condition

What do you advise I discuss with the neuro - I have an appointment on Thurs...
Her last neuro/consultant seemed to think she was imagining the pain!

Can anyone shed some light as this is really getting me and my mother down!

[musicsmiles]

Hi, Blueynadski,
I am so sorry your mother is in such pain. I empathize with you too!! I know my husband does go through alot of cramping before his muscles go weak, in certain areas of his body....and he is on Baclofen for the pain, it helps. I would definitley let the Neuro know that there is cramping when you have ALS, and maybe you should take an article on ALS that indicates, there is cramping involved with ALS, to show the doctor. And ask if he would prescrip Baclofen or some other pain meds for your mother.
If you or your mom are not happy with the service you are getting from this Neuro doctor, I would seek another opinion and another Neuro doctor...someone that will relieve your poor mom of her pain.

Good luck
Musicsmiles