View Full Version : May I ask a question about a friend? Don't know what to do to help him.

13th November 2017, 17:14
I hope it's ok that I signed up on this website, I would just like to ask a question or two about a friend if that's ok?

Basically he is my best mate and has been for pretty much 40 years since we were kids, he is 47. Apart from being best buddies the other thing we share is that as we have got older we have both turned into terrible hypochondriacs however (Ill call him John) John's worries are now concerning me quite a bit and I really don't know how to help him.

About two and a half to three years ago John started complaining about twitching muscles, I believe that they call them fasciculation's. I'm not sure, but I think it all started with his eyelid and then slowly progressed to other areas of his body like the arms and legs and have progressively got worse. He visited a GP early on and apparently the GP blurted out that MND was a possibility but didn't mention any further tests, so obviously this sowed the seed with John and convinced him he has MND.

He did go to another GP about a year and a half later but that GP wasn't concerned due to the longevity of the twitches and the lack of other connecting symptoms. She did apparently set him up for an MRI I think but John didn't go because of his fear of finding out for certain.

As time has gone on we speak every few weeks and each time we speak he mentions that the twitching has got worse and he thinks he has developed other symptoms like aching joints, but at the same time John as he always has since I have known him continues to visit the local gym and as far as I know still bench presses similar weights that he lifted 15 years ago!! So could he do that with MND?! He is a big strong guy and still looks powerful these days with no weight loss or wasting as far as I can see. I am not sure if he experiences any weakness although because I suffer with arthritis I can imagine that any pain in a joint usually gives the sensation that it is weaker than it feels when no pain is present.

Obviously I am no expert but I try and console him with the fact that he is still doing the weights and that whilst his twitching has got worse there hasn't been any drastic changes regarding other symptoms bar the aches and pains. In fact I have tried to get him to go and have an x-ray of his back because I wouldn't be surprised if he had a trapped nerve or something similar by bench pressing weights he was doing at 25!!

However no matter how hard I try he won't go back to see a doctor. He feels, and I can understand his worries, that if it is MND there is nothing that can be done and would prefer to not know, (his words). Unfortunately it's hitting him hard with depressive thoughts and it is clearly affecting things with his family and I can see his mental state and demeanour are very low. I try to say to him that it could be something like Benign fasciculation syndrome and that it's very possible that he is worrying himself silly unnecessarily however he just won't go and see anyone.

So sorry for the long post but I was just wondering if anyone can advise anything because I just don't know what to do to help him. I have read up quite a bit on MND and some articles say twitching can be an early symptom and some say it's a late symptom, and some information suggest that he would have had other symptoms three years down the road but then you read another article and you hear about a slow progression in some cases. So obviously he needs to see an expert but he just won't go.

Any advice would be gratefully appreciated because I hate seeing my best friend suffer like this and he hasn't even been diagnosed!

Thank you.

PS I have read some articles here and I must say there are some incredibly brave, determined people on this site.

13th November 2017, 18:01
Hi Max and welcome to the forum;

It is quite unlikely that John has Mnd and if he does it's a very slow type. Twitching is a sign but joint pain without any other signs is probably not.

Obviously he should have the tests because it could well be something else that can be treated and if his already depressed not knowing then knowing won't make that much difference.

Best wishes, Terry

13th November 2017, 18:07
Hello no three possible ones that your friend might !have !peripheral neuropathy ,caffeine overdose or Agoraphobia there are others but I don't think they apply to him.

13th November 2017, 18:10
Thank you Terry much appreciated. That's what I keep telling him, and that is by ignoring it he is feeling low anyway so if it isn't MND he could possibly find treatment for another condition. I just can't persuade him though and not quite sure how to push him to see someone.

May I ask if it was a slow progressing MND what other symptoms would he possibly be seeing now?

13th November 2017, 18:44
Almost anything Max but something;

Weakness, speech and swallowing problems, balance and difficulty in moving limbs etc, breathing problems, many of us have all of them and more.

I think your best bet is to say what I said above and there could well be treatment for what he has so that he can live normally.

Love Terry

13th November 2017, 18:50
Terry really appreciate it thank you.

13th November 2017, 20:42
You are welcome Max and let us know what he has;

Love Terry

14th November 2017, 12:54
Dear Max68,

I am sorry to hear that your best friend John is experiencing these symptoms that are causing him a great deal of stress and worry.

As you and fellow members on the forum have correctly explained, fasciculation's are not uncommon with 70% of the population experiencing them in their life. Fasciculation's can be commonly caused due to anxiety, exercise, caffeine or lack of sleep. Without a physical problem such as weakness, slurring of speech or other symptoms, the fasciculation's would not immediately be considered to be related to MND. Over a period of two and a half to three years , the progression of the illness would be very marked, so if his symptoms have not really changed or got worse during this period , it is unlikely to be MND.

We do appreciate how worried and anxious your friend is thinking that he might have MND and this is not a feeling which is going to go away until he is completely assured that he does not have the condition. There are lots of things that could be causing the symptoms that he is experiencing and as you have correctly said, the GP would be the best person to investigate this. Also, if you are able to convince him to see his GP, it might be worth asking the GP to refer him to a neurologist even if it is just for his peace of mind and for reassurance.

Would John agree to call our helpline? Our service is completely confidential and we would try and reassure him if that is appropriate. Our helpline is a Freephone number 0808 802 6262 and we are available Monday to Friday from 9am-5pm. We have an evening helpline as well that is run by our volunteers from 7pm-10:30 pm.

I do hope that the above information is helpful.

If you do have any further queries or if you would like any further information, then please do not hesitate to contact us again.

Kindest regards,

14th November 2017, 13:21
Prachi, Thank you so much that's great. I'll try and persuade him to call the number or at the very least contact his GP again. Thank you again for your kind post.

20th November 2017, 12:48
May I just take the time to thank you all again. Went out with friends at the weekend and spoke to John about this post and the replies. Fortunately he really appreciated me posting on here, which is a relief because he is a bit bigger than me!!! I spoke in depth with him about what is going on and it is just major muscle twitching and pain in the joints that he is suffering with, even to the extent where he dreads walking up the stairs however he makes no mention of any weakness and he looks as big as he always has due to his gym work. I didn't force anything on him but said that I had the number Prachi kindly posted and told him that if he wanted the number I would let him have it and it seems he is going to think about it.

So thanks once again for your help, at least I don't think I can do more, it's now down to John to see how he moves forward in dealing with his symptoms but I of course will just support him whichever way he wishes to go.

20th November 2017, 14:21
Dear Max68,

I am very pleased to know that the given information has been helpful. If there is anything further we can do, then please do not hesitate to contact us again.

Kindest regards,

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