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Eastendgirl

Just a rant: Can't accept diagnosis

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Depressed
Eastendgirl

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on informing the DVLA of diagnosis and the potential impact on my earning ability if my driving licence were to be rescinded, I want to be absolutely sure that there is no doubt before I declare it officially.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.

 

 

 

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Stumbler

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

 

:moonieman:


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!"

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Sluggish
Shirl

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" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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