Does this sound like bulbar onset?

[Ali_123]

I hope it’s ok to post here. I’ve been experiencing body wide twitching since the end of October, it’s not continuous but I have had it everywhere. Not worrying on its own but I have other symptoms such as on/off numbness/spasms in face and hands, and my hands feel/look weaker than they were .

My most worrying symptom is that my tongue twitches at rest, not all the time but clear dimples under the skin of an otherwise completely still tongue - from looking on the internet and videos of fasciculating tongues it seems like this is a clear sign of MND. I’ve had electrical tests which were clear although apparently they often are with bulbar onset.

I’ve seen 2 neurologists now who both said That I have no clinical weakness (I agree with this) and reflexes are normal so it’s not MND but health anxiety. The first neurologist at the beginning of Jan didn’t see the tongue fasciculations on observation (it only does it sometimes) so I sent him a video and he replied that in the absence of weakness or wasting he still doesn’t need to see me for 6 months. Saw the second neurologist today and again he wasn’t concerned about the tongue fasciculations although he agreed he could see them. He felt that if I’ve had symptoms for 3.5 months I would have progressed by now and would be having issues with speech.

I’m not feeling very reassured, I could put other symptoms down to something else (e.g. cramp fasciculation syndrome) but with the tongue fasciculations I really feel that this could be an early case of MND.

I’m wondering if I should see an mnd specialist rather than a general neurologist. The guy I saw today only sees 3-4 cases of MND a year.

Any comments welcome, feeling pretty desperate!! Thank you

[Terry]

Hi Ali and welcome to the forum,

It does not sound like Mnd to me. Bulbar normally happens quite quickly and you would have noticed changes in your speech and swallowing.

Your other symptoms don't marry up with normal Mnd either.

Best wishes, Terry

[MNDConnect]

Dear Ali,

I can understand your concern, some of the symptoms you describe do mimic those of Motor Neurone Disease (MND), however these symptoms are usually accompanied by weakness or atrophy, even the tongue fasiculations are usually accompanied by a weakness in the throat or the tongue which would manifest as slurred speech, a weak voice, or difficulty swallowing.

Although you say that your hands feel weak, you do not actually describe a weakness which prevents you from making certain movements with your hands. The spasms you describe can be associated with other conditions and the numbness is probably caused by the sensory nerves, not the motor nerves which are affected in MND.

As you do not seem to have any of the symptoms which you would be expected to have after 3.5 months of fasiculations, it may be that, as the neurologist suggested, they are being caused by heightened anxiety. As he has suggested you see him again in 6 months time he is probably going to see how your symptoms have progressed during that time. As MND is difficult to diagnose in many cases, looking at the progression is very often how the Neurologists determine the diagnosis.

If you are still not reassured you do have the right to a second opinion, there are specialist MND Neurologists you can be referred onto by your GP or current Neurologist. Many MND specialist neurologists are based in MND Care Centres around the country, if you follow the link below you will be able to locate the closest care centre to you.

https://www.mndassociation.org/support-and-information/our-services/care-centres/

If you would like to talk to someone about your concerns please do not hesitate to contact the MND Connect helpline on 0808 802 6262 to speak to an adviser.

With kind regards
Jacqui Anderson
Senior MND Connect Adviser

[Ali_123]

Thank you both very much for getting back to me. I think I might ask to be referred to an MND specialist then, although it still seems like watching and waiting might be required here.

No, my hands are not actually weak but they look a bit less muscular than they were, plus my thumb muscle looks flatter to me although can’t be sure about that. I do have incidental carpel tunnel.

Do you know if tongue fasciculations can ever be benign? I’ve pretty much read that true tongue fasciculations when the tongue is at rest are not a good sign and are highly suggestive of MND, which is why I’m so worried!!

Thanks again for your help!

[Ellie]

Hi Ali,

Sorry you find yourself in such a state of worry.

No, my hands are not actually weak but they look a bit less muscular than they were, plus my thumb muscle looks flatter to me although can’t be sure about that. I do have incidental carpel tunnel.

Carpal Tunnel Syndrome can account for these physical changes.

Do you know if tongue fasciculations can ever be benign?

Yes, tongue fasciculations on their own can most definitely be benign. You have seen 2 different Neurologists, both of whom found you to have no clinical weakness, which is very good news.

I’ve pretty much read that true tongue fasciculations when the tongue is at rest are not a good sign and are highly suggestive of MND

I have no idea where you read that, but it is simply untrue - MND symptoms are more wide ranging.

Best wishes,

Love Ellie.