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Eastendgirl

Didn't know where else to post....

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Stressed
Eastendgirl

.... so I hope this is the right place.

 

(Still) going through visual problems (for the 3rd time) in 6 years... Ophthalmologist felt symptoms were likely to be MS and referred me to Neurologist. I've had a couple of MRI's, an evoked potentials test, visual field tests, colour tests etc.... the only thing I haven't had is the lumbar puncture (which Neuro says is the most certain way of deciding if symptoms are MS or not), not that I haven't been sent for it, I have - twice... and chickened out twice!! The first time I just had the other tests done but decline the LP, the second time I cancelled the appointment a few days before it was due, I was in such a state of anxiety over it, I decided the 'need to know' didn't make the stress worthwhile.

 

I doubt he will refer me again... (but kind of assumed that if things got really bad, they would do further tests regardless...?) No longer sure I want to know anyhow, maybe ignorance is bliss...

I wish the label MS had never been suggested to me.... that it could have just been left as a set of seemingly unrelated symptoms which no one was too concerned about... Unless I pluck up the courage to have the LP, I'll always be wondering, but not sure I ever will find that courage.

 

Just want to go back to what passed for normal and forget...

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Nick

Iv'e read your post several times now and think that you have found the 'right place'. I am sure others agree that the forum here is indeed that place.

I think you have also already answered your own question. Inside you know that you don't want to be forever 'not knowing' and the offer of an LP could well answer the question.

The question then is, how to find the courage? The thought of having an LP is scary, that's for sure. I can't think of anyone who would think otherwise. There are a few posts here which indicate that the thought is worse than the actual procedure. I know in my own case I was petrified beforehand but that having plucked up that elusive courage the actual thing was painless and straightforward.

On the positive side of course there is always the possibility that having the LP might rule out MS, on the other hand even if the results indicate it is MS then at least you will know what the problem is. Knowing what a problem is, is half the battle. Either way you will have achieved something worthwhile and a much better result than simply never knowing.

 

I say you need to go for it!

 

 

Hope that helps

 

Nick

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Just another Warrior...........

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pshrink

So I have only had one LP, but FWIW:

Ask the Doc to wait an extra couple of minutes between giving you the local anasthetic and putting the main needle in. Makes all the difference.

Lie still for as long as possible (like an hour) and then take the offered cup of tea.

Take someone with you to talk to for that hour.

Make sure that you have been to the loo first - you do not want to break up that hour.

 

After mine, I walked through the hospital to have blood taken (far worse, after two attempts the nurse called her supervisor who took another two tries to do it).

Then I drove home (28 miles).

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Stressed
Eastendgirl

I was expecting a letter just offering me an appointment with Neurologist but instead received letter saying that the LP shows evidence of ongoing inflammation of the central nervous system. So now waiting to see him. Would have expected to have received information like that in person not in a letter, but perhaps he thought as I was half expecting it, it wouldn't be a shock. He was wrong. It was.

 

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Nick

That's really pretty poor. I'm surprised you received that kind of information via a letter. It seems that different hospitals work in different ways. After my own LP I had no information, just an appointment letter. The problem with receiving 'technical' information such as that tells you very little, only that you have a problem, something you already know! I hope your appointment is really soon, the last thing you need right now is to get stressed over worrying about what it all might mean. Try not too, just make sure you have the questions you want to ask ready before you go.

 

Nick

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Just another Warrior...........

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ptlike

Hi I've read your posts and although not the news you wanted maybe you can now look forward to some treatment.

Best wishes

Peter

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Nindancer

That's rotten. I hope your appointment comes up quickly!

Sonia x

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Stressed
Eastendgirl

Well I've had another letter confirming that Neurologist has referred me to a colleague - not quite sure what that's all about, but I guess I'll find out in due course. I tried asking the appointments people if I could get an appointment with this new guy sooner rather than later as I've had additional symptoms not experienced before and they just said either go to your GP and get them to push for an urgent appointment or if really bad, go to A&E.

 

Getting appointment with GP is damn near impossible and our local A&E has an average waiting time of 4-6 hours - guess I'll be coping with it on my own then. I have found taking painkillers before bed helps a bit in getting a reasonable sleep, but it's only a temporary solution.

 

I would just like to speak to someone about all this to get some clarity and well, just to offload basically.

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Sleepy
Scully

Hello.

I get copy letters between the hospitals and the GP. I think most hospitals do this. Is yours addressed to you personall, or addressed to the GP and you ar copied in perhaps?

Either way, expecting it or not, it can be a little un-nerving.

Your consultant may have referred you on to an MS Specialist, or a specialist of some kind, depending on what they are thinking.

Can you get an emergency appointment with your GP if things are deteriorating for you? Sometimes you have to insist you are seen the same day?

 

Try to take someone with you to your appointment. And take a very short list of your symptoms, when each one started, and how long they persisted for. It will help.

 

Scully

 

 

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Stressed
Eastendgirl

Went to see GP to ask if she could push for Neuro referral to be brought forward - she said nothing she could do. So I wrote letter to the referring doctor. No reply or acknowledgement. But yesterday i received an appointment letter for 8th December - so by the time that appointment comes around it will be some 19 weeks after I had the LP done.

 

Probably quite quick in NHS terms, but I don't think it's acceptable to have to wait that amount of time to discuss test results that were communicated to me by letter...

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Nindancer

That is pretty bad, is it worth calling PALS?

Sonia x

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Nick

Please do complain ! While you may not get much of a response personally it does all help to make change happen. I have always found the NHS system very very good, but one thing that seems to constantly crop up is the problem of communications between different 'sections' of the NHS. GP's seem far to over burdened and it always pays dividends to go straight to the source.

Glad that you have that appointment....make the most of it and have your questions ready and if possible take somebody with you so that you can remember what's said.

 

Nick

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Just another Warrior...........

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Sleepy
Scully

Every hospital has a PALS service., Patient Advice and Liason Services).

Their contact details will be on the hospital website, or ring the hospital and aks to speak to PALS.

 

I've used them once in a similar situation, and found them to be excellent. Within days I had an urgent appointment booked.

 

I urge you to call them, explain the situation, the letter with results, the difficulty in getting to see the neuro, and, more importantly, the effect the delay is having on you.

PALS will help you very quickly and efficiently.

 

Let us know how you get on sweetie,

 

Scully

 

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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Stressed
Eastendgirl

 

Thanks all for your replies, sorry it's taken me so long to respond. I just feel so **** on so many levels.

 

I've not had appointment brought forward but referring Neuro replied to my letter that Neuro no2 wants me to have another MRI scan prior to seeing me, so am waiting for that to come through.

 

Apart from the physical symptoms, which I am just trying to live with, the most difficult thing for me at the moment is the depression and anxiety. I am being treated separately for this, but on reading around the subject, think this could potentially be linked to my physical symptoms. Not that it makes any difference I suppose, just that I thought it was two separate issues and now realise it could be part of the same thing.

 

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Procrastinating
Stumbler

Depression, anxiety and particularly stress are understandable responses for anyone in this situation. However, you may want to read this :-

 

https://multiplesclerosisnewstoday.com/2017/03/08/stress-and-its-affect-on-multiple-sclerosis/

 

Now is the time to look after yourself, even pamper yourself, to make yourself feel better.

 

I always reflect on the following phrase :-

 

"God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference".

 

Take care of yourself whilst the NHS wheels slowly revolve for you.

 

:moonieman:

  • Like 3

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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Nick

Learning how to control stress is a huge part of managing your own MS............Not easy! It takes time and perhaps one reason for letting others around you know about your MS. The more you stress the more probability of increasing MS symptoms, after a while you will get to recognise the preliminary signs and then you really MUST look after yourself FIRST.

 

Nick

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Just another Warrior...........

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Sluggish
Marina

I’m sorry to hear you’re feeling so rotten... Being put through such a long waiting time is cruel.

 

Depression can also be a symptom of MS:

 

“Depression is common in the general population, but research suggests that people living with long term conditions such as MS have a higher risk of experiencing depression. It can be a symptom of MS or develop as a consequence of living with the condition.”

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

 

As Stumbler and Nick have said, stress is notorious for not playing nice with MS.

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Marina

(belated DX in June '05, SPMS)

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Stressed
Eastendgirl

I had Neuro appt yesterday; relapsing-remitting MS was confirmed. Of course it wasn't a total surprise, having lived with knowing it could be a possibility for many months, but in some ways, having it confirmed by a Consultant, actually hearing it said out loud was still a shock, if that makes sense..?

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Procrastinating
Stumbler

No matter how much you expect it, it is still a shock.

 

So, be nice to yourself now and give yourself some time to process the information.

 

:moonieman:

  • Like 1

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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Nick

Of course it makes sense ! It came as a shock to me and I suspect many other people with the same experience will agree. The problem with having a 'label' 'pinned' to you with the words 'MS' is its very difficult to evaluate simply because you still don't know what that means. (Not at all like saying 'You have broken your leg and it will take six months to recover' ) It takes a long time to sort it out and to understand specifically how you are affected and just how you can make adjustments to accommodate and make the most of your new situation. It's a dangerous time because of the difficulty of overcoming any preconception you, and your friends and family may have about MS.

On a positive note I know that I view my own situation very differently now to when I was diagnosed ten years ago. The forum here is pretty quite at the moment but I know that there are plenty of people who will be only to keen to help, me included.

 

Nick

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Just another Warrior...........

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Stressed
Eastendgirl

Thanks for your replies, it means a lot to know someone understands.

Have any of you contacted a MS helpline, if so did you find it helpful? Reason I'm asking is I don't know how long it will take for the MS Nurse to get in contact with me, something the Neuro said they'd arrange.

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Nindancer

Hopefully the MS nurse referral will happen quite quickly. Recollection is a bit fuzzy but I think I got a letter with a leaflet giving all contact info I needed (phone numbers& email addresses).

My whole diagnosis was a shock, I thought I just had a trapped nerve and was banned from googling when I was referred to neurology after a spinal MRI. I can still imagine it was a hard thing for you to hear tho, it's a serious thing to get this kind of diagnosis.

Take your time to digest it tho and be kind to yourself. I hope you have some good support around you but there's forums like here and some great groups on facebook (and some crappy ones too). I've not called any helplines but believe it's worth a go if you need to each out and talk to someone/answers etc.

Take care

Sonia x

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Sluggish
Marina

When I was finally diagnosed, I rather oddly shook my neuro's hand and thanked him with a big smile! Mostly as it was a relief to finally have a name for what was wrong and a relief that somebody finally believed there was actually something wrong (having been through 5 previous neuros, all of whom pretty much poo-pooed me). However, and despite the DX not being a surprise, I then burst into floods of tears when they were trying to do a blood test immediately afterwards, which was a shock reaction. So, yes, hearing it out loud can definitely make sense :hugs2:

 

About a year before my DX, I posted this topic:

What Difference Does Having A Dx Make?

http://ms-people.com/forum/topic/62-survey-what-difference-does-having-a- dx-make/

(might need to copy and paste the link, as the software for abbreviations sometimes breaks it)

 

In my case, the neuro told me there and then that he'd get the MS nurse to contact me. I ended up having 3 phoning me! Only one, though, was actually from my area. I guess the neuro wanted to make sure I had one, even if from a neighbouring area. As far as I can remember, the nurses phoned quite soon.

 

I've never contacted a help line, but then I had already joined one or two MS groups and had already started this forum, so I felt I had enough info from these, and directly from the horse's mouth, so to speak. But if you feel the need to, the MS Trust would be good for queries about nurses, as they're connected to and help fund MS nurses; there's also the MS Society help lines too.

 

https://www.mstrust.org.uk/a-z/ms-specialist-nurses

https://www.mstrust.org.uk/a-z/ukmssna-uk-ms-specialist-nurse-association

  • Like 1

Marina

(belated DX in June '05, SPMS)

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