Jump to content
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.

Just a rant: Can't accept diagnosis

3 posts in this topic Last Reply

Recommended Posts


I've written a detailed letter to Neurologist today, asking if he can definitely confirm the dx of RRMS.  I don't know why, but I just don't/can't accept that I have MS. 


The first Neuro I saw was always very vague and non-committal, 'MS' was never actually mentioned. I always felt as though my symptoms were trivial and I was wasting his time. The way his letters were worded were also vague; 'ongoing tendency to inflammation or inflammatory problems in the CNS'.

Second Neuro conducted more tests and was a little more specific, but only one letter actually mentions MS, the others refer to 'two probable attacks in two years'.  Doesn't exactly fill you with confidence does it...!


In the 'What is MS' booklet, it states that 'MS damages nerves in different parts of your brain and spinal cord. Where this damage is, will affect which parts of the body gets symptoms'.  So, a Neurologist should be able to accurately confirm whether what symptoms a person is experiencing is down to MS or not (sure it's not that simple, but seems logical to me).


I have spoken to an MS Nurse briefly about this, and she has tried to reassure me that a Neuro wouldn't diagnose MS if they weren't sure; but given the persistent badgering on informing the DVLA of diagnosis and the potential impact on my earning ability if my driving licence were to be rescinded, I want to be absolutely sure that there is no doubt before I declare it officially.


Has anyone else felt like this?  I really hope I'm not the only one to have serious doubts about their diagnosis.




Share this post

Link to post
Share on other sites

There's a few things that we have to accept.


Primarily, our Doctors/Neuros are not magicians. Yes, they have their tests, which may give them a view into our bodies, but the results are open to interpretation, i.e. they're not precise and don't show everything that is going on.


Secondly, the symptoms of MS also present in various other conditions too. So, a diagnosis of MS involves eliminating any other potential causes of the symptoms.


Thirdly, a diagnosis of MS has to satisfy the McDonald Criteria for diagnosing MS.


So, in the light of those reasons, a formal diagnosis is not given lightly, as once give, it cannot be "ungiven".


I can assure you that a fair few of us have been in your position. We call it Limboland and some of us were resident there for a number of years. Although, the diagnostic process is improving.


So, by all means, ask the question. But you have to acknowledge that our bodies, especially our brains, are complicated pieces of kit, which are not fully understood.


In the meantime, you need to look after yourself. Live healthily, eat healthily and, most importantly, manage your stress levels as this can make our bodies "unwell".

Take care



John aka Stumbler (as I do fall over!)

Illegitimi non carborundum


"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post

Link to post
Share on other sites
Vegged Out

Hello @Eastendgirl


Looking back through your activity on the forum, I can see how frustrating and worrying the past years have been. A specialist nurse once told me how Neuros are up against it because they cannot take a biopsy of the brain or spinal cord while their patient is living. A salient thought that highlights the fog of Neurology. All the scanners and path labs at their disposal produce test results that have to be discerned, discussed and dismissed until a definitive diagnosis for our dis-ease can be found... Limbolanders (Linboish?) have patience in common - and our Neuros have we patients on their hands too.


Which is a complicated way of saying that @Stumbler is right: Neuros don't give out a MS diagnosis like sweets. In my case, it took an old school Neuro going back through my records from my three former hospitals, and the present one, to move me from uncertain to certain, and able to move on with my life. Being unsure, hoping for a reprieve, wanting truth, is so debilitating because the phrase if it isn't MS, what is it? will go around and around inside your head.


So, my advice would be acceptance. You are allowed to grieve, to question the outcome and the future, to seek as much support and help as you can. It is not going to help you mentally of physically to keep looking back and wishing away reality.


I know @Stumbler's advice about limiting stress is right - every single time I have wittingly or inadvertently let stress build up, I have suffered. No more so that a recent situation where I said yes to something I knew I couldn't do, really wanted to be able to, and today I've admitted I was wrong. Doesn't come easy!


The one piece of advice I received in the early days of my struggle was concentrate on the things that you can still do well and stop doing the things that make you ill. It is still good to have goals, to learn new things (word processing, copywriting, book reviewing, crochet, in my case), but you will need to leave space for the not-so-good days. 


I used to have the phrase one day at a time below my signature - I will pop it back there now. I need to remind myself.

Shirley  "one day at a time"


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Similar Topics

    • What Criteria Provided A Diagnosis?

      Despite years of attacks, multiple symptoms, MRI of brain showing lesions coming and going and involvement of the corpus callosum, I still cant get a diagnosis of MS from my neurologist - or a diagnosis of any kind! Needless to say I'm pretty frustrated. Do patients in the UK have similar problems obtaining a diagnosis? I live in a very isolated part of Ontario, Canada hundreds of miles away from a 'second opinion' so when a patient has only one neurologist serving a huge area, well....Any comment will be greatly appreciated. Thank you.

      in General Discussion about MS

    • Diagnosis Anniversary

      It's my MS's official birthday. 8 years old today.    (Yes, I know it's a lot older.)   It's as good a reason as any for a drink at the Worcester Victorian Market this afternoon.   Paulx

      in General Discussion about MS

    • Rare Aggressive MS Diagnosis

      Hi,   My fiancée is 25 years old and has always been fit and healthy. In August 2017 he suffered from bladder retention, which resulted in a trip to the hospital to get a catheter fitted. Over the next few days his legs became increasingly weak to the point of having a bad fall on the way to his GP and having to return to hospital where he has remained since.   His first MRI scan showed lesions in the CNS leading to an MS diagnosis and a course of steroids. Despite the high dose of steroids, he continued to get worse and each MRI he received showed multiple new lesions. Within 2 weeks of his admission to hospital he had lost all movement in his legs and arms, lost all bowel and bladder function, began to lose his eyesight and was transferred to the High Dependency Unit and put on oxygen as his breathing had deteriorated.   After multiple failed treatment attempts he began to receive Cyclophosphamide and 5 months on we are seeing very slow improvements. We have had mixed opinions regarding diagnosis, some say it is a very rare, aggressive variant of MS and others say their gut feeling says it is something else. Either way everyone who has seen him has agreed they have never seen a case like it.   Research on the subject is limited, so if there is anyone who has had a similar experience with aggressive MS, or anyone with any knowledge or advice, we would appreciate anything you can tell us.   Beth

      in General Discussion about MS

    • MS diagnosis

      My husband's uncle, sister and niece had/have MS so when my daughter told me she thought she had sinusitis - although it was just that eye movement hurt - and I found out that optic neuritis is a symptom of MS, I thought before I tell her to make an appointment, I should ask for your advice on where to go. Should she see an eye doctor or a neurologist? She lives in London (South-east). I also no longer know how the health system works. Could she go straight to an MS expert of her choice - and if so, can anyone give me a name or two?? Any advice would be very very gratefully received?

      in General Discussion about MS

    • MS diagnosis

      Hi everyone I've just joined today...I've had MS symptoms for about 7 years..I think..my memory!! ..I had an MRI about 5 years ago which was inconclusive...I had VER which showed slowed responses and optic neuritis according to my doc...I have now ON in my other eye..but because for the last 4 years I've suffered from panic and anxiety disorder I can no longer go through with MRI's my neuro would like me to have..and I definitley do not feel able to have an LP..my question is...finally...do I stand any chance of ever getting diagnosed? the docs say they 'think' I have MS..but that doesn't help me.

      in General Discussion about MS

About Us

Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.

The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.