Not Diagnosed Yet

[Gosport Nancy]

How do I get about getting a diagnosis when since the 80's and several house moves I have been unable to have any referral for further tests.

 

Back in the mid 80's my GP told me he suspected I had MS only the Neurologist I was referred to just duplicated the basic tests that the GP had already done.

 

When I asked for a referral for further investigations he told me that all my symptoms were due to anxiety.

 

30 years down the line I am no nearer to finding out what is wrong with me despite my midwife during one labour in 1983 said that MS had been put on my notes to inform staff on other shifts that they needed to be aware of my Multiple Sclerosis as it was already causing difficulties.

 

I asked about this when seeing GPs further down the line and they said they knew nothing about this.

 

My P.I.P. application was turned down due to lack of evidence so how do I get this?

[Nick]

Hi Nancy,

 

30 years ago it was far more common to be unable to clearly diagnose MS. A diagnosis of MS has to be given by a neurologist and normally involves several appointments along with things like MRI scans and tests such as a lumber puncture ,and evoked potentials( EP) tests, to give a proper indication that your condition is caused by MS.  This is not something anybody wants to hear!  Another point is that a simple diagnosis of MS does not give any indication of the level of disability caused by the condition.  Some people who have been diagnosed with MS are still able to pursue an active life and are not badly affected. Others are less fortunate and can become severely disabled. It is a massively variable and complex condition! 

You don't actually indicate just how your present health is affected, but my thoughts are, that you do need to go back to your GP and explain just where your problems lie, and explain again that years ago your GP told you he suspected MS. 

It is always difficult these days getting through to your GP, as to where the problem lies.  GP's are massively overworked and are always under pressure to see the next patient.  With this in mind it can often be a good idea to keep notes on what is happening to cause your difficulties and then be able to make a concise list of your symptoms and your concerns, so that on making an appointment, you are able to explain clearly.  This way  you may be able to get to the bottom of things. 

With regard to PIP.  I myself am presently going through this daunting process, changing over from DLA to PIP.  These forms are difficult to understand and specialist knowledge is required to properly complete them.  One of the best bits of advice is to get assistance from the various voluntary organisations  (D.I.A.L, Citizens Advice)  You could also look on the Benefits&Work website  https://www.benefitsandwork.co.uk    

 

I know just how difficult all this is and hope you do manage to get more support.

 

Nick 

[Marina]

Hi Nancy, and welcome to our forum

 

I’ve been in a similar-enough situation... it’s a very frustrating place to be, and does nothing to help your faith in doctors.

 

It was years before I got a DX. I’ve had a GP laugh his head off at me in mockery when I went to him with a severe headache I’d had for 5 weeks (at that time, MS wasn’t even a consideration). After my 1st MRI which showed lesions, before I got my DX, I had a neuro tell me all I need is a sleep clinic; another tell me that my tremors were due to the anxiety written all over my forehead (I told him he’d be anxious too if he had my symptoms!); another ask if me if I thought my emotions affected me; another tell me it is MS, it isn’t MS, it is MS, it isn’t MS, all in the space of half an hour; another specialist tell me that if all I want is a label, he’d give me one of CFS.

 

I think that, firstly, you have to find a GP who’s willing to listen. Saying they know nothing about your history isn’t good enough, they also need to take into consideration what you’re saying now, what your symptoms are now, and look to see if they can find your history.

 

Are you able to ask the surgeries in your area if there’s any GP who has some knowledge about MS?

 

You’ll also want a referral to a neuro, but it should be an MS specialist as not all neuros know everything about MS. If you go to this link, it’ll show you who the MS specialists are in your area:

MS services near me

WWW.MSTRUST.ORG.UK

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MS services near me

 

Secondly, if you can afford it, going private with a neuro - at least initially - might help. For starters, you’ll get longer appointment times than the NHS gives you.

 

Try making lists to take with you, for the GP and neuro. Two lists:

- one being a bullet point list of your symptoms with dates of when they first started and how often they recur;

- the other being a history of all your medical conditions through all your life, including any symptoms that you might not think are MS related.

Try to keep the lists as short as you can so that the doctors don’t feel they’re too long to bother reading. Then give them those lists and ask them to read them in full before asking you any questions about them. A good doctor will do so, a not-so-good doctor will push them away to one side.  Lists also help you to not forget to mention or discuss what’s in them.

 

If you still have no luck after any of this, then getting firm is the next step. Firm but polite. I got to a point of such frustration at one stage that I even wrote a letter to my pain specialist (the only person at the time who believed I had MS) and my then GP asking if I had to fall over or go blind before anyone listened and paid attention to me! I’m not suggesting you do this, but a bit of polite insistence might help.

 

Good luck and let us know how you get on?

 

And, DX or no DX, please feel free to ask anything you like about symptoms etc.

[Gosport Nancy]

Hi Marina. Thanks so much for your informative and helpful reply

 

I have made a note of my nearest MS nurses's email address and will send an informal email to her requesting information on GPs as she might know.

 

I am also planning to ring the only GP practice we have access to with a view to switching GPs.

 

My main concern right now is that the severity of my symptoms. which have got a lot worse this summer is making caring for my terminally ill partner more difficult by the day,

 

When the time comes for for me to be on my own I want to move to some kind of supported housing for retired people.Without a DX I am thinking that will be very complicated and I have no family nor friends locally that can provide ongoing support.

 

I relocated to Sussex to take care of my husband as he already lived here and my family are in Hampshire.

[Gosport Nancy]

2 hours ago, Nick said:

 

Hi Nick

 

I first reported my symptoms in the late 80's but the neurologist said he thought my symptoms were due to anxiety (I was only anxious about what my symptoms might mean)

 

My current symptoms include loss of sight in my left eye (the entire field except for the blind spot looks like frosted glass). a dragging right leg (it doesn't like stepping up kirbs so I have to lift it), a week right arm and hand which means that I cannot open jars with that hand so have to use my left, sudden spells of extreme fatigue after minimal exercise (this happened yesterday after spraying half a dozen weeds with a hand held weed killing spray and clipping a few bits of grass with long handled shears) and lymphoedema which an endocrinologist said was idiopathic and chronic. 

 

A physiotherapist called to see me in 2016 and measured my blood pressure and found it dropped on sitting from lying down and then dropped again when standing from sitting. I have ad several episodes of drops in blood pressure that has led to me having to lie down and then not able to pull myself up for half an hour or so. The last time I did this it was while trying to open a top window that was stuck.

 

I have to lie down before I fall down if I raise my arms up above shoulder height so cannot peg out washing or hang curtains without regular breaks.

 

In 2016 I collapsed at home with multiple organ failure and spent several days in a coma following a cardiac arrest.Now GPs and hospital staff will only focus on that one off episode and ignore the symptoms I have had from the 80's

 

 

[Marina]

Symptoms being made worse by heat is notorious in MS:

Hot and bothered: how heat makes MS symptoms worse

WWW.MSTRUST.ORG.UK

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Colds, flu and other infections Many infections cause the body’s temperature to rise. You may realise that you have a fever or you could just feel unwell. Either way, MS symptoms can flare up and y

Read more  

 

You might want to add that to your list of symptoms! Many of us don't cope well with heat...

 

I'm not sure if an MS nurse are able suggest a GP, it might be that they're not allowed to, but it's definitely worth a shot. Even if s/he can't name a GP, maybe you could ask them to help point you in the direction of how to get help.

 

I'm so sorry to read that you also have the distress of your partner's health. It must be such an emotional upheaval for you. Stress is just as bad for MS as heat, so that can't help either.

 

I really do hope you manage to find a good-enough GP and get a referral to a good-enough MS neuro. A word of warning, the whole process of getting a DX can take weeks, if not months... it's so wrong, I know, but is unfortunately the way here in the UK. In the meantime, you might want to take a peek at our Resources section, where you'll find quite a lot of information about various aspects of MS, symptoms, DX, etc:

https://ms-people.com/forum/links/

 

 

[Gosport Nancy]

24 minutes ago, Marina said:

Symptoms being made worse by heat is notorious in MS:

Hot and bothered: how heat makes MS symptoms worse

WWW.MSTRUST.ORG.UK

---

Colds, flu and other infections Many infections cause the body’s temperature to rise. You may realise that you have a fever or you could just feel unwell. Either way, MS symptoms can flare up and y

Read more  

 

You might want to add that to your list of symptoms! Many of us don't cope well with heat...

 

 

Oh my word!....several years ago I made the mistake of having a bath in the morning. I got out of the bath with a struggle then went into town to buy some sandals from my favourite store that sold them with velcro  fastenings. So I get to the part where I was meant to try the shoes on and had to get the assistant to help me as I had come over all week and wobbly

Edited 16 Jul 2018, 1:16 pm by Marina
Fixed reply inside quote

[Marina]

Oh my goodness me, you poor thing, you really have been through the mill!

 

These are also typical MS symptoms:
 

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loss of sight in my left eye (the entire field except for the blind spot looks like frosted glass):

optic neuritis - multiple sclerosis encyclopaedia

WWW.MULT-SCLEROSIS.ORG

 

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a dragging right leg (it doesn't like stepping up kirbs so I have to lift it):

https://www.mstrust.org.uk/a-z/foot-drop

 

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a week right arm and hand which means that I cannot open jars with that hand so have to use my left:

https://www.mstrust.org.uk/a-z/weakness

 

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sudden spells of extreme fatigue after minimal exercise

https://www.mstrust.org.uk/a-z/fatigue

 

[Nick]

Hi Nancy,

 

Marina has given you some brilliant advice!  A lot of things you are describing do indeed resemble MS symptoms.  This is the problem when you aren't formally diagnosed.  One thing about the forum here is that you are not alone and we are all only too pleased to be able to try and help.  One of the big no,no's of conditions such as MS is stress. From what you say you already know that your situation is extremely stressful!!!  Most of us here know what that feels like and many of us spend a lot of time trying to learn better ways of handling such stressful situations.  At the moment I guess it feels like it's impossible to contemplate any way of de-stressing but you have already started by posting on this forum!  Small achievements, such as changing GP's or contacting MS Nurses and simply getting somewhere will all help.  As you can tell from Marina's story it can be a battle!  MS is such a difficult thing to understand by others, who may often misinterperte your visible symptoms.  

 

I do hope you soon have some success with your battles

 

Nick 

[Gosport Nancy]

On 16/07/2018 at 14:14, Marina said:

 

 

 

 

In 2016 following a cardiac arrest and coma I had an echocardiogram which showed left ventricular systolic dysfunction with low ejection fraction of around 40% . Still no MS diagnosis after that yet a recent study showed that ALL people with MS in the study had left ventricular systolic dysfunction with low ejection fraction so I have added that one to my list now.

 

"More than 100 patients underwent comprehensive echocardiography—67 with MS and 36 without. All patients had similar incidence of cardiovascular risk factors including arterial hypertension, obesity and high lipids in the blood.Patients who were diagnosed with MS had decreased left ventricle systolic excursion, which was confirmed by lower 2D and 3D ejection fraction. "

Patients who were diagnosed with MS had decreased left ventricle systolic excursion, which was confirmed by lower 2D and 3D ejection fraction. "

 

 

Edited 19 Jul 2018, 3:00 pm by Gosport Nancy

[Happymama]

Thirty years ago?  Nothing's changed then.  I was sent to see the Neurologist but only before the GP had done the bloods because he said that would save time, and the Neuro said that he'd find out what was wrong with me, and I had a 3 Tesla scan of head and neck only, and six weeks later the Neuro's acolyte, half my age, was telling me there is nothing wrong with me.  'See your GP about your symptoms.'

 

I've had a heart scan around the same because the perimenopause put me into palpitations for two years.  Nothing untoward found.  Bar palpitations .  

 

Good luck everyone! 

 

[Gosport Nancy]

@Happymama The neurologist said all my symptoms were likely caused by anxiety, without doing any investigations.

 

I doubt getting a diagnosis will happen any time soon as I am a carer and am housebound so can't make long hospital appointments.

 

My husband comes with me for short appointments but is needs 24/7 care now so no scans etc can be fitted in around my carer role.

 

I treat the more trouble symptoms with alternative therapies or just put up with them while I pace myself, eat well and practice mindfulness meditation

7 minutes ago, Happymama said:

Thirty years ago?  Nothing's changed then.  I was sent to see the Neurologist but only before the GP had done the bloods because he said that would save time, and the Neuro said that he'd find out what was wrong with me, and I had a 3 Tesla scan of head and neck only, and six weeks later the Neuro's acolyte, half my age, was telling me there is nothing wrong with me.  'See your GP about your symptoms.'

 

I've had a heart scan around the same because the perimenopause put me into palpitations for two years.  Nothing untoward found.  Bar palpitations .  

 

Good luck everyone! 

 

Quote

 

 

[Eastendgirl]

On 14/05/2019 at 19:31, Gosport Nancy said:

 

I doubt getting a diagnosis will happen any time soon as I am a carer and am housebound so can't make long hospital appointments.

My husband comes with me for short appointments but is needs 24/7 care now so no scans etc can be fitted in around my carer role.

 

It sounds as though you could do with some support around your caring role, your Local Authority is obliged to give you a Carer's Assessment and support can be put in place up to 4 times a day that would enable your partner to be looked after while you have to attend appointments/scans etc.  Just google 'Carer Support' or search directly on your local authority website.  There is help out there but it often isn't promoted and you have to be insistent, but it pays off.

 

[Gosport Nancy]

@Eastendgirl Thanks for your reply which is good advice for some people.

 

I have had a carer's assessment but nothing came of it as my husband isn't happy with anyone else being his carer.

 

I  requested an update back in February but haven't heard anything back.

 

It's really not a biggy as a diagnosis wouldn't really help my situation