Progression of bulbar onset

[Lizzie]

Does anyone know if bulbar onset always progresses to lower limb/ mobility problems ? I was diagnosed with bulbar onset MND in January this year, and whilst my speech and swallowing have deteriorated a lot, and I have lost muscle in my arms, hands and shoulders, so far I have no mobility problems.
Prior to my MND diagnosis I had bilateral total knee replacements, and sometimes wonder if there is any connection. I suppose I’m waiting for the inevitable mobility problems, but feel lucky they haven’t happened yet. Don’t really know what to expect 🤔.
Lizzie x

[Ellie]

Well Lizzie.... The thing is there is no black and white answer 🙄

It's pretty standard to expect that, if one has a diagnosis of Bulbar Onset MND/ALS, there probably will be some limb involvement, at some stage in the futur but it's not a given.

Have you any dexterity issues? In MND/ALS, the muscles lose mass due to lack of use, as the nerves can't transmit the 'move' messages, meaning muscles shrink after loss of function.

So, sorry for not answering your question!

Love Ellie.

[matthew55]

Snap Liz I have had Bulbar since Jan. My voice and mouth are badly effected, my saliva is out of control and don't mention the toilet! I can still swallow and move everything else but my strength and energy are reducing. You're my sister by another mother. 😉😄x

[Lizzie]

Ellie, thanks for your response.

Matthew, we must be related !! Thanks for your reply bro. 😆

This disease is so confusing and unpredictable. I even have moments when I question the diagnosis, because I’m still walking about, but the emg was definite. Due to lockdown I haven’t had the opportunity for direct contact with the neurologist. I’m sure this applies to most of us. Whilst all the professionals involved are very supportive they are not MND specialists. Is it ok to have doubts sometimes ???
Lizzie x

[denise]

Yes I think it is normal to have doubts. Stephen says quite frequently that perhaps it's something else and the medication is therefore wrong. 😐

[Ellie]

The EMG shows up problems before we even know we have problems!!

To me, my legs were working perfectly but the EMG said otherwise.

[matthew55]

I just today received the letter informing me that my next appointment, a physical examination, with my neurologist is on the 21st Jan 2021. I guess I should be encouraged that he has some hope that I will still be around by then. 😃x

[denise]

Only the good die young so you will be around forever

[Doug Carpenter]

You'd damn well better be!!

Doug

[Ellie]

I just took out an annual subscription to an online newspaper 🤞🤞🙃

[GaryM]

Extended warranties are going to be a hard sell to me.

[Mary C]

to lizzie : Yes I see my neurologist (who is an MND consultant)2 monthly face to face since diagnosis. The other health professionals in the palliative care team also come to see me when I need them to for example the OT came last week to advise me about having a wetroom and where to position grab rails etc.Hope you get the support you need.Best wishes Mary

[Heather R]

Hi Lizzie, think I am your sister too! Like you I have kept asking "Are you sure I will end up in a wheelchair?" (and need to move out of my terraced house which would be pretty difficult to adapt), as I am still walking. I have bulbar onset affecting speech and swallowing, and my hands are increasingly affected. But the emg did suggest my legs were on their way. The OT has been encouraging me to move to a bungalow, and the mnd nurse says I am doing the right thing as next year I will be in a very different situation. I must say I get very tired and can't walk so far, and have started to notice moments of losing balance, as well as cramps in my legs. It's like dying slowly, you have time to notice and suddenly appreciate the wonderful things parts of your body have done for you all your life (which you are now losing). So I guess we must really relish our walking ability! (but hope it won't affect you this way) x