Advice

[christianmilson]

Hi,

My name is Christian, I'm 22 from Sussex.

Around in April/May I noticed that I was having frequent muscle twitches all over my body from my legs to my face, and cramping, fortunately I have medical insurance and saw a neurologist very quickly where they did full brain + spine MRI, nerve conduction studies and EMG. All the tests at the time came back normal.

Over the next couple of months I started progressively getting cramping and weakening of the hands (worse in right than left) and now have mild wasting of the Thenar muscles in both my hands which is associated with altered sensations in my palms (almost like a mild burning sensation). I also now have twitching of the face muscles around my mouth which starts mainly when I smile or whistle.

I was referred back to my neurologist last week, who is repeating the EMG testing on Friday.

This experience over the last couple of months has understandably caused me great anxiety, driven by my suspicion I may have MND.

My question is what questions should I be asking when I next see my neurologist, and if I need a second opinion are there any neurologists you can recommend?

Thank you for taking the time to read this.

Christian.

[MNDConnect]

Dear Christian,
Thank you for your message.
I am sorry to hear that you are most concerned your symptoms indicate Motor Neurone Disease (MND).
It is true that fasiculations, or twitiching’s, are indicative of MND, however at least 70% of the population will experience twitching’s at some point most of which will be benign and caused mostly by stress and anxiety.
If the twitchings are accompanied by a weakness, then this is the time that a referral to a Neurologist would be sort. A weakness does not necessarily mean it will be MND as many conditions can cause a weakness such as you describe in your message.
It is not usual (although it can happen) for a burning sensation to occur in close proximity to the weakness as this is caused by the sensory nerves rather than the motor nerves, however this is a question to ask of the neurologist.
The EMG and nerve conduction tests are designed to investigate whether there is nerve signal damage.
The EMG will look at whether the nerve signals, which instruct a muscle to move, are reaching their intended target, the muscle, or is there an interruption at any point from the brain or spinal cord as the signal travels to the muscle? If there is an interruption and the signal is not getting to the muscle this indicates that damage has occurred.
Not all nerve signals will be damaged at the same time but if there is any damage the EMG will pick this up. The EMG cannot diagnose MND, but the Neurologist will examine the results and along with any symptoms you have may be able to pinpoint why this is happening.
If the EMG again comes back normal it would suggest that your symptoms are not those of MND because after 6 months damage caused to the motor nerves from MND, this would be picked up.
If this is the case, the Neurologist may be able to shed some light on what might be causing your weakness and may suggest a referral to another consultant, so it is worth asking him that question.
You may want to confirm with him that if it was MND that the EMG would have picked this up by now, just to reassure yourself.
He may explain things in medical jargon, so if he does, I would suggest you ask him to explain exactly what he means and how he feels this might progress.
If he does diagnose MND, then you will definitely want to ask who he will refer you onto, an MND specialist team or nurse. You may also want to ask what type of MND he thinks you might have, he might not be certain of this at this point but he should be able to give you an indication of how he feels the MND might progress.
If you are not happy with your appointment and would like a second opinion you can ask your GP to refer you to another Neurologist, there are specialist MND Neurologists in clinics around the UK, there is one in Sussex, at the Brighton and Sussex Medical School under Professor Nigel Leigh. Your GP should be able to make a referral.
If you have any further questions, please do not hesitate to contact us on the helpline at: [email protected] or by calling 0808 802 6262 to speak to an adviser.
Kind regards
Jacqui Anderson
Senior MND Connect Adviser

[christianmilson]

many thanks for the reply

[Banned]

Hi Christian, I'm haveing emg test on friday ,I've been haveing all over muscle fasiculation for last 5 months ,had clinical with neurologist, and bloods carried out ,they were all clear ,been haveing swallowing issues for around 6 weeks now ,I'm 43 and a ex soldier, I'm dreading emg test ,the doctor who's is doing it has told me he will let me know if I have mnd or not once test is complete. Like you I am pretty worried about it ,my wife dose not know how worried I am and I have a 11 year old boy so fingers crossed for friday ,I will keep my fingers crossed for you aswell ,keep your chin up.

All the best
Craig Edmunds