Please help.

[Margaret22]

My apologies but I have posted this already in the wrong section as I am new to the forum and still learning my way around. Three weeks ago, my son who is 26, started feeling that the grip in his left hand was weak and he was struggling to grasp objects. He also had twitching and trembling in this hand particularly in the thumb, index and ring fingers. At times he felt that his left forearm was twitching. His thumb muscle was in pain. Unfortunately, he decided to go on the internet and research his symptoms. This led him to realise that he could have MND and as he suffers from anxiety he became extremely distressed. I managed to get him a doctors appointment which is not easy at the moment. The doctor did some tests and ruled out Carpel Tunnel and told him that it is possible that he has MND and that he needed a test, however, this is not possible at the moment so he will just have to wait for a few months. She also told him that it would start to effect his right hand. Now he has a long list of symptoms; His left wrist aches, the little finger of that hand has a lump on the top joint and his thumb, index finger and ring finger twitch. He has a pain in the shoulder if he holds his arms out to the side. His right arm is now trembling and the thumb on that hand aches and the muscle spasms, but the grip does not feel any different. In addition his ankles ache. I am sorry to write this long list of symptoms but I am desperate for some kind of help or guidance. I am surprised that he has so many symptoms in three weeks. He is at his wits end and I am scared that he might do something silly. Does anyone know if there are any private doctors that I might be able to get him tested with as I am unsure I can keep him hanging on for months. Thank you to anyone who takes the time to read this I am grateful for your time.

[Ellie]

Oh Margaret, as a mum myself, my heart goes out to you. Your son's anxieties must be through the roof at this strange time, even without thinking he has and MND - I'm sorry you're both going through this.

I am not a doctor but MND does not come on as you've described - so quickly in multiple regions, for one. The finger lump, aches and pains, for two. That said, anxiety can cause physical symptoms which might be red herrings. Is there anything he cannot do, such as button shirts, tie shoelaces?

Given your son's anxiety, I would have thought that if the GP did believe it could be MND, your son would have been put in as an Urgent referral.

Of course you can pay to see a private Neurologist and have various tests done, inc EMG, nerve conduction studies, scans, bloods etc (i.e. not cheap ) but if you think it'd be worth it, seek out a neuromuscular specialist, preferably with experience in MND.

If he has a mental health support worker, they should know about this current situation, if not and you've any concerns, contact his GP again.

Big hug to you Margaret.

Love Ellie.

[Tess]

Hi Margaret,
My partner noticed symptoms at age 31 when at the gym but at the time we didn't know what it was, but it was all very gradual and sounds quite different from what you describe, especially how you mention hands, ankles, shoulder pain all so suddenly and at the same time etc... but I'm no expert and can only go off my partner's progression.
After a few months he couldn't do his shoelaces or buttons as loss of function started progressing on one limb to begin with but no major pain nessessarily.
In hindsight I wish we had gone private to get an answer sooner as I truly understand the anxiousness from waiting and the unknown, but it wasnt a quick diagnoses from our experience (took us 18 months of monitoring and nerve tests that were every few months) until they could give us an answer for certain, so we had to be patient.
Tell him not to do anything silly, Covid is silly enough...and any distracting activities and Netflix binges will pass the time, tedious to have it on the mind 24/7.
Strange response from the GP to tell you this and then leave you hanging for a few months time...I would chase and see when this appointment would be, this may speed things up.

Tess x

[Margaret22]

Dear Ellie,

Bless you for replying it is so nice to have someone to respond as I feel very alone and I am grateful for the effort it must take you.

I did not feel that the symptoms should be progressing so quickly so am glad to have someone reinforce that. i also feel that he is so anxious that he is "manifesting" things and noticing every little thing.

I have contacted the GP again and I hate to be negative about a profession that I have the highest regard for particularly at this awful time but she was useless. She told him that she had read up on MND and that it would be starting to effect his right arm. Again she told him he would have to wait and see. All this after I had called the surgery expressly to inform them how worried he was and that it states in his notes that he suffers from anxiety.

Thank you for your support and I am returning your hugs.

Love Margaret xxxx

[Margaret22]

Dear Tess,

I thank you so much for your reply. As I said to Ellie one feels very alone. it is very helpful to hear other peoples personal experience. Can I just check - are you saying that from first noticing something was not right it took a few months until your husband could not do his shoelaces up? Also was it just one side of his body that was effected? I do hope that you do not mind me asking and would understand perfectly if you did not wish to reply.

I have contacted the doctor myself and she has spoken to him again but remains adamant that the departments that he would have to attend are closed and that he will have to wait. Seems slightly ridiculous that as from tomorrow he could go to a pub but can not see a doctor!!

I have tried to tell him not to do anything silly but he just feels that this is too overwhelming.

I hope you are not having too difficult a time and sincerely wish you well.

Love Margaret xxxx

[Margaret22]

Dear Tess,

I thank you so much for your reply. As I said to Ellie one feels very alone. it is very helpful to hear other peoples personal experience. Can I just check - are you saying that from first noticing something was not right it took a few months until your husband could not do his shoelaces up? Also was it just one side of his body that was effected? I do hope that you do not mind me asking and would understand perfectly if you did not wish to reply.

I have contacted the doctor myself and she has spoken to him again but remains adamant that the departments that he would have to attend are closed and that he will have to wait. Seems slightly ridiculous that as from tomorrow he could go to a pub but can not see a doctor!!

I have tried to tell him not to do anything silly but he just feels that this is too overwhelming.

I hope you are not having too difficult a time and sincerely wish you well.

Love Margaret xxxx

[Margaret22]

Dear Ellie and Tess,

A colleague of mine (who has no knowledge of MND) has suggested that I get my son a hand exerciser to help him strengthen the muscles and therefore improve his grip. I do not know enough to know if this is a good idea or it would in fact make his hand weaker in the long run.

Would either of you know if this would be recommended. Sorry to be a nuisance and keep bothering you. Perhaps I should add that at the moment apart from feeling it is difficult to grip things he can do things such as shoelaces etc.

Take care both of you.

Love Margaret xxx

[Ellie]

Hmm, that's a hard one Margaret and you're right to be cautious.

Without knowing the cause of his weakness, it's impossible to know if exercising would only aggravate it and do more harm than good.

The grip issue has to be investigated so if the (uncaring) GP, or surgery reception, can get your son onto the cancellation list for the Neurology appointment, and I'm acutely aware that there is unfortunately going to be a long waiting list due to Covid-19, that would be a start. Good to hear his fine motor skills are intact.

I wonder if there is a good Physiotherapist close enough to you who might be able to shed some light on the problem and whether or not to exercise the hand.

And you're right too that he'll be hypervigilant now for every little twitch and ache, which will cause him more anxiety.

I'm sorry I can't answer your question Margaret.

Love Ellie.

[Margaret22]

Dear Ellie,

Thank you so much for the reply. The physiotherapist would be a good idea and I will follow it up.

Unfortunately he called me earlier to say that he had difficulty picking up his vitamin tablet this morning and really had to concentrate to get his index and thumb to work together. Does that sound like MND to you?? Sorry but I do not know who else to ask.

Take care and thank you for all the support you give people.

Love Margaret xx

[Ellie]

I'm so sorry Margaret, it's impossible for me to say.

If this is going to cause him a lot of stress and anxiety and, by default stress you, it may be worth seeing if you can afford a private consultation - and that is NOT me saying I think MND is likely, but rather to get answers quickly and to hopefully lessen your son's anxiety. Or the Physiotherapist option and take it from there?

Love Ellie.

[Margaret22]

Thank you Ellie I appreciate your honesty.

I am going to make inquiries about seeing a private consultant because you are right he needs answers and at the present time the NH is going to involve a lot of waiting.

I hope you have a lovely weekend.
Take care xxxxx

[Deb]

Hi Margaret,

I am so sorry you are worried about you son. As a mother, with sons in their twenties my heart goes out to you and I can understand your worries on a number of levels. It's not surprising that you and your son are so anxious.

I am really surprised (shocked !) that a GP would entertain the notion of an MND suspicion without the results of a battery of tests and immediate follow up support. Before I was diagnosed I saw two separate consultant neurologists, one for a second opinion. I had months of tests which were then repeated to make sure.( I drew the line at a second lumbar puncture! ) I knew MND was suspected because I really pushed but noone would say for certain because it is such a devastating diagnosis and it is difficult to diagnose. With respect,GPs do not know enough about neurological conditions to suspect MND.

I am no expert but your son's symptoms do not sound at all like mine. My leg weakness came on gradually with no pain or tingling. I can really understand that you need answers right now for his and your peace of mind so good luck with getting a quick private appointment.

Take Care and hugs to you,
Love Debbie x

[Margaret22]

Dear Debbie,

Thank you so very much for your reply and for sharing your Journey with me. I too was shocked and feel that she could have handled it a much more positive manner even if that was what she suspected. I also felt that she was wrong in telling him it would soon show in his right side as I could find little evidence to support this.

Finding this site has been a God send as there are so many kind and supportive people here.

Sending you a big hug in return.

Much love Margaret xx

[Tess]

Hi Margaret,
The problem with seeking diagnosis answers from other sufferers is that everyone is affected slightly differently and no one will tell you that you have it unless absolute certainty, hence often months of testing is required. I completely understand how overwhelming it is.
With my partner is was one limb then the next limb etc from late 2017 onwards.
If you want answers faster, private would be the way forwards. But in terms of mental health, there may be further waiting ahead of you till answers are given and so talking to a counsellor may ease the emotions you both carry as it can be an awful weight to bare.

Tess x

[Banned]

Look into Lyme disease.