Help, Help ,Help

I have MS and my 30 year old son who is so strong and brave has developed symptoms of MS Numbness to his right side exhausted terrible muscle cramps and pains His GP was supportive and took lots of blood tests for many conditions that were all negative He then referred him to a Neurologist for an appointment. He has received a letter from the consultant this morning referring him back to the GP hence no specialist appointment , The reason being all blood tests were negative and he doesn’t believe his symptoms sound like MS. He has suggested m son is suffering from anxiety, He went to see the GP this morning to discuss the letter and the GP has suggested just treating him for anxiety It took a lot of courage for my son to go to the Dr in the first place he is busy at work but finding mobility difficult he has also suffered incontinence Surely he needs an MRI or Lumber puncture My father died of MS my brother died 2 years ago of MS and I have MS how can this Neurologist refuse my son an appointment and now the GP will not make him another referral Is this even Legal Thanks in advance for your help

He most certainly does need an MRI or a lumbar puncture (or both). If I were you, I would ring the surgery and point out all the family cases of MS, if they are not already aware of them). The GP should get in touch with the neurologist to get him to authorise the tests your son so obviously needs. If the neurologist is not willing to do this, your son needs to be referred to a different neurologist who will do so. If the GP is not cooperative, you should ring the MS Society helpline and ask that the MS Society advocate for your son on this.

I feel the treatment your son has received is almost unbelievably poor. I hope it is just ignorance of his circumstances that have led to this. Please keep us informed about what happens and PM me if it would help.

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Hi Mully

My first thought is that blood tests aren’t helpful when diagnosing MS. It can’t be seen in the blood. So what on earth did the GP think he/she was doing, testing his blood? It could only be useful to rule out other causes. So an absence of another cause would actually be of more suggestive of MS rather than less. To diagnose MS, a neurological exam is needed, usually followed by an MRI, an LP and VEP, as I’m sure you know, having been through the process yourself.

A family history of MS is strongly suggestive of MS, but of course, it is not a directly inherited disease so isn’t conclusive. It might be the first disorder you think of, but your sons’ symptoms could still have been caused by something else. That doesn’t mean MS shouldn’t first be considered of course.

Is there another doctor in your sons’ GP practice? Perhaps he should be trying for an appointment with that person. If I were he, I would also be finding out who the practice manager is and writing to them.

Also, your local hospital should have a PALS unit. They are Patient, Advice and Liaison Service. You (or he) could try phoning them. I don’t understand why the neurologist has referred him back to the GP without further investigation of a neurological cause!

Of course, all of this should really be done by your son himself as he’s an adult, but knowing that young men are really very bad at such things, and being his mother you want to get all the answers he’s not been given. Perhaps you should get him to sign a letter, giving you his authorisation to act on his behalf during this process. Without such authority, the GP and the hospital could just refuse to speak to you.

Best of luck


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Thank you so much for your reply, My son has made a private appointment to see a Neurologist £250 but worth every penny as far as I am concerned but still furious he can’t get help on the NHS, At the moment he doesn’t have the stomach for a fight so I will leave it for a while but then I will be encouraging him to make a massive fuss however he feels very vulnerable at the moment Thanks Mully

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Many people have commented in the past that they’ve seen a private neurologist initially, then swapped over to the NHS once diagnosed - often seeing the very same neuro!! It’s utterly infuriating that this has to happen, but I’m sure you and your son will feel better once he’s seen a neurologist. And at least there’s no long waiting list when it’s private!



take a step back.

It sounds as if you are putting a lot of pressure on your son and it feels as if you’ve already come to the conclusion that he has m.s. – this wont help your son.


Hi, I agree that your son definitely needs further investigation.

No, it`s not forced to be MS, but with so much of it in you family, then of course you are going to be scared it might be,.

Dont you need a GPs referall to see a neuro? I thought you did.

I went private initially as there was a 10 month wait to see a neuro…but I did it with a GPs refferal.

I was wrongly dx`d with PPMS, as my symptoms were typical. But it turned out to be something else

Good luck.



Thank you sewing chick, My son has been ill for about a year and I have been telling him not to worry of course it wont be MS and It’s not hereditary (although secretly feeling worried) He’s never been one to complain about his health and until last year was never ill Then he started having a numb foot and intermittent numbness on his right side .He was very frightened and chose to ignore it but now he feels he must have an answer . Of course I hope and pray it is not MS but for his own sanity I completely understand why he wants an answer and I have actually told him it may be years before he does get an answer and that’s if he gets one at all He now has a private appointment to see a Neurologist on Monday who I believed trained at the Walton centre in Liverpool and of which I have heard good things So hopefully he will get some answers Thank you again for your support Mully

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l feel the same as Krakowian - you said your son was feeling anxious at work- and all this could be making things worse for him. Stress is an enemy to all of us - not just pwms.

Try and be more positive for his sake - and yours. And lets hope seeing a consultant privately will soon give you answers.

Many of us have been wrongly diagnosed. Especially, with B12 deficiency. Read/google ‘Could it be B12 - an epidemic of misdiagnosis’.


OK, so a young man is presenting with neuro symptoms, he has an MS family history as long as your arm, the GP refers and the neurologist doesn’t even think he’s worth a look? Bizarre.

I think he was sensible to arrange for a private consultation. These things need checking out, if only to give reassurance that there isn’t too much amiss - that way a person can get on with his life.


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i was just going to suggest you pay private,but seen you already have,with the family history i would say theres every chance your son may have MS,we all know its not classed as hereditary BUT it is Familial .

My son was showing same symptoms as me,and he had tests a few yr ago,he didn’t get a diagnosis at the time,but i still feel its a matter of time before he does,as he gets episodes of unexplained illness that come and go,just like i did and he feels unwell most of the time and has to pace himself a lot.I was told for years that mine was anxiety and in some ways when i got my diagnosis it was a relief.

Hi mully, I think there is more to some of this stuff…

I also had bloods a plenty that never showed any inflammation whatsoever and I believe that’s what they’re looking for, as I was under investigation for Crohns disease!

I saw an osteopath after my first fall and she twigged something wasn’t right, so wrote to my GP advising I needed an MRI. I was sent to the spinal unit first and after an examination they agreed an MRI was needed. The spinal lesions where the reason I was referred to neuro.

It seems we all follow quite different paths to diagnosis. Good luck, I thought I’d add my five pennies worth wink

Sonia x

Cog-fog! My point was, he needs an MRI, he won’t get a diagnosis without one x