Bulbar Onset MND Sufferers

[pauljameson]

Hello. I was diagnosed with bular onset MND in June 2017, since then the MND has got worse but only affects my mouth region, particularly my speech now is very poor. I believe I may be getting lower limb symptons, but nothing tangible, just tired muscles after excercise, slow reactions when I play sport, a bit of muscle twitching. I would be interested to hear what anyone, who had bulbar onset MND, experienced when it first spread to their limbs. Are there any tests I can do to see if it is spreading?
Thanks, Paul

[Ellie]

Hi Paul and a warm welcome to the Forum.

Did your Neurologist ever give you an MND subset - e.g. ALS, PLS, PBP, IBP (amyotrophic lateral sclerosis, primary lateral sclerosis, pseudobulbar palsy, isolated bulbar palsy) which, though still broad terms, would give you some idea of what you're dealing with.

At your next Clinic appointment, get a full examination and the Neuro will know if there are signs of upper motor neuron and/or lower motor neuron involvement (UMN, LMN). If needed, you may be asked to do an EMG test to see if there is LMN involvement in your limbs, which would signify progression.

I was not bulbar onset but I'm afraid ther is no set timeframe for when, or if, limbs become symptomatic. At 3 years post diagnosis to be doing as well as you are is remarkable, although I know that is quite a subjective statement as you, like the rest of us, wish you'd never heard of MND!!!

Take care.

Love Ellie.

[pauljameson]

Hi Ellie,
Thank you for the welcome! I see you were diagnosed in 2007, so well done on getting this far & I see you're very active on this forum. I have ALS subset and will ask my consultant to see if I can get an EMG, thanks for that advice. I find it very frustrating that it's virtually impossible to forecast progression of the disease, but at least for me it appears to be progressing slowly so I'm thankful for that. One day at a time!
Take care, love, Paul

[miranda]

Hi Paul. Welcome to the forum. I too was diagnosed in 2007. Initially with pseudo bulbar palsy, then MND then after about four years was told it was PLS. My first symptom was slurred speech. It’s difficult to recall what happened when but basically nothing much changed after that although I started having falls after losing my balance. Eventually falling downstairs and ending up in hospital for four weeks with a fractured pelvis! I can still walk short distances at home with a rollator but use an electric wheelchair outdoors. I have minimal twitching. My next change was swallowing problems. Although I had a PEG fitted Several years ago, I can still eat a soft food diet. However, as you are aware, it’s impossible to predict progression and my “journey “ is unique to me and, as you say one day at a time but Do get your OT on board with advice to make you safe - particularly to prevent falls (stair rails, grab handles etc).

[David R]

Hi Paul,

I was diagnosed with Bulbar onset in Jan 2019, same issues as you with speech and swallowing, they have progressed since them but I have been physically ok until recently I’ve started noticing that I just feel slightly weaker in arms and legs. I can still actually lift something quite heavy but can’t maintain the lift and feel exhausted afterwards so I’m assuming my muscles might be weakening. Haven’t been able to see my consultant since late last year due to Covid, I have a telephone conference booked this month so am intending to ask if there are any checks to be done?

Regards

David R

[bilvers]

Hi there, I was diagnosed with Bulbar Onset in May 2020, so interested to read everyone's experiences so far. Gives me a positive spin too, to see those who have had it for a long time and still dealing with it well.

[JAC]

hi, think this is an old thread but...

i started having speech problems in autumn 2020. slurred speech and running out of breath. initially thought it might be long Covid. after 6 months of tests (lungs, EMG x 2, ECG etc) and deterioration of speech, tongue fasciculations constant since Feb 2021, i was diagnosed with MND bulbar onset in June 2021.
hitherto because i'm fit, i thought i was just losing my speech, but since diagnosis have noticed almost constant pins and needles and twitching in legs so assume it's 'spreading'. haven't been given a further 'type' of MND and have had no contact from the Multidisciplinary Team that was supposed to 'kick in' after diagnosis. also feel i'd like to know a 'prognosis' so i can plan transition from what is otherwise a 'normal' life. suspect this isn't possible. putting down voice banking now but wish i'd been advised earlier and would urge anyone to do so ASAP.

comforted to meet fellow travellers here.....

[Graham]

Hi JAC,

Outcomes vary considerably with MND. Life is going to become increasingly difficult but you have a window to prepare.

It is very important to find out what kind of MND you have. You have to be determined with your consultant. Don't be fobbed off. There are gene therapy trials happening right now but you must know that type of MND you have for the best outcome from your trail. You may have to go private but first call is your consultant.

[Ellie]

Hi JAC,

At this stage it looks like you're going to have to do the chasing, shouldn't be the way, but you need to be seen by the MDT - it's so unfair to have left you swinging, I'm sorry. Do you know which team you should be under?

That constant pins and needles is not usually associated with early MND, and needs to be checked out.

Love Ellie.

[Lynne K]

Hi Bilvers and Jac. Welcome to forums if I haven’t already said so. I see that you’ve both had good advice already so I won’t bore you by repeating.

About neurology clinic appointments: I had a couple of virtual appointments last year, then my neurologist said that she thinks it best for me to go to her clinic for a face to face. I’ve had two face to face meetings since and my next is the beginning of September. The Covid safety things that Salford Hospital have put in place are excellent. I wonder why other hospitals don’t do similar.
Love Lynne xx

[JAC]

HI Ellie et al
I'm under Luton & Dunstable MDT - i think, as that's where my neurologist is based. both myself and my GP are chasing. really dark place to be left 'swinging' on your own. And to top it off, my daughter has just CV19 for the second time so we are self-isolating! i think the pins and needles in my legs are twitching/fasciculations - which i've had on my tongue for 6 months. Started having leg cramps during sleep but now use a muscle relaxer rod for 10 mins before bed which appears to keep them at bay Beenax Muscle Roller Stick - Perfect for Trigger Points, Deep Tissue, Myofascial Release, Leg, Quads & Calf Tightness - Designed to Relieve Stress and Relax Tight Muscles: Maxedbuy.co.uk

[matthew55]

Hi Paul, I was diagnosed with Bulbar last year and after my last Hospital visit I thought I had regressed but each day I am getting back to what passes as normal for me. My message is never give up. Hope isn't all it's cracked up to be! Stay Strong my new friend. 🤗😁🤭🧐xx