Forum

where next?

Hi everyone,

My name is Zoe. Some of you may remember me from a couple of years back when I  first joined the MS Society. I am now having even worse symptoms but am still stuck in limbo, here is my story...

My neurological problems started in October 2010, whilst I was in hospital with a severe kidney and urine infection. Everything came on very suddenly, but from what I understand, M.S. can be triggered by an infection.

No-one seemed to take my symptoms very seriously at first but I declined rapidly and I was left barely able to walk as I couldn't feel my feet and didn't know how to move my legs, they felt heavy and disassociated from my body-very strange feeling, with tremors in both my hands and my right foot, disorientation and loss of balance, blurred/double vision, pins and needles/burning pain, difficulty swallowing and my bladder stopped working (urinary retention)...to name but a few!

I had a neurological examination, which I was told was abnormal and I was referred for an MRI of my brain and also had a tilt table test. There was some question over two small patches in my brain on the MRI, but these were eventually put down to migraines. I had nerve conduction studies also around this time and these were negative, because of this, my Neurologist made assumptions about my illness and wasn’t prepared to do any more tests, so I was left to ‘watch and wait’.
After being discharged from hospital, I found that after walking for a very short time, my right leg became heavy and my foot turned inwards, without me realising and started dragging, I often shook and felt faint and lost co-ordination and balance (particularly when I have become too hot).

Despite everything I was trying to cope with, I made the step to go to university in September 2011. I settled well and had carers twice a day at my halls. Unfortunately I contracted the flu 2 weeks into my course and was bedridden with it for some time. The night I decided to try and get back into my studies and go to see an imperative performance for my course at the Uni theatre, I took a very sudden turn for the worse.

It started with violent shaking which lasted hours and I was also very un-coordinated. I fell about all over the place as if I was drunk (but obviously hadn’t touched a drop)! By the time I eventually got back to my halls, I was very incoherent and un-coordinated and wasn’t even able to put my key in the door of my room!

My sisters came and took me to the local hospital (just across the road from my halls) but by this time I was barely able to stay stood up without support of another person. The doctor in A and E was very concerned about me and did some examinations, he suggested my symptoms were that of a severe MS relapse and I should get an MRI referral asap from my GP. He wrote a letter to my GP for me to take as soon as I could. (The hospital didn’t have neurologists based there so no point keeping me in until tests had been done).

Later that night my condition worsened to the point where I slurred my speech, my mouth completely dropped and my whole body went floppy like a rag doll, so I couldn’t move my arms or legs at all. An ambulance was called and I was blue lighted to the nearest specialist hospital, as it was feared I had suffered a stroke.

To cut a long story short, I was seen by neurologists at the hospital and no one knew what to make of me, but acknowledged it was very severe. I had another MRI of my brain, which was inconclusive and also further nerve conduction tests, also inconclusive. It was therefore put down to the fact that my symptoms were functional in nature and I would gradually improve and make a full recovery!

Six weeks later, I had been transferred to a local hospital to my home and with the help of physio, had taught myself to walk again so was discharged home.

The next few months were very up and down and I still couldn’t walk very far at all without foot drop. The other symptoms also stuck around to a slightly lesser degree and every time I have an infection/viral illness or am very tired, my mouth droops without my control.

Just over a month ago I had another major relapse and was taken to hospital once again, with the same symptoms as before (I had woken up unable to move my arms or legs and my face had dropped severely). Yet another MRI of my brain was taken but this time they mentioned a patch of what could be demyelination, but they couldn’t diagnose anything from it. No other tests were performed and I was once again told my symptoms were ‘functional’, except this time I was told they believed them to be of a psychiatric nature and referred me to the local mental health team!!!

I went along to the assessment and I am pleased to report I was given a clean bill of health from them and have a letter confirming that they believe my illness is not of a psychological nature!

 

So, I am now in more of a limbo than ever! My GP does not at all understand and the last twice I have been in tears after my appointments!  My symptoms are becoming worse and more frequent and I really don’t know what to do next.

I would appreciate people’s feedback and would also like to know has anyone else had the mouth drooping when they have had severe relapses?!

I feel I should be pushing for a spinal MRI or at least something else, this has now been two years and instead of recovering, I am worsening. I do have periods of remission in-between these very severe attacks but these periods are coming very few and far between.

The illness is beginning to take over my life and I just wish I knew what was going on. I have agonising back pain every day (not a muscular type pain), after only a short time walking both my feet now turn inwards and my legs bow beneath me, my hands are numb and feel like cotton wool or like they are fizzing, I have no grip and often need to be fed. My hands/legs/body tremor. My legs are weak and feet feel ‘fluffy’. I have overwhelming fatigue and no energy whatsoever. My mouth drops at any time when I am over tired or have extra illness to cope with (e.g. urine infection). My bladder keeps going into retention and I keep getting UTIs because of this….

Sorry I'm waffling! Sorry this is such a long post, please do message back and let me know your thoughts, I would really appreciate them.

 

Love and best always xXx

Oh Zoe ((((massive hugs)))

What an awful time you've been having - and very frightening too. 

Quite frankly I'm staggered that your GP hasn't already pushed for a referral for you to see a specialist to start proper investigations - particularly in view of the of the fact that you've been admitted and transferred to various hospitals because of the severity of your health.

I'd suggest making another appt with your GP but this time take someone with you - one of your sisters perhaps? Stand your ground with him and ask for a referral - if necessary see another GP rather than your own and tell him what you'd told us.

Take the bull by the horns and insist on some help because you clearly need it.

It can take some time to find out what's going on - things like this are never easy to get to the bottom of - but I think you should be under the wings of a specialist to investigate things properly and oversee your care.

((hugs))

Debbie xx

  

 

  

Poor you. That all sounds awful. More (((hugs))).

Debbie is right with all her advice. You (or someone else on your behalf) needs to get pushy.

GPs, being generalists, don't know what they don't know. They' hear hooves and are taught to think horses not zebras'. If problems are uncommon and they haven't happened to have come across someone with those particular things before, they may not be fully aware.Just because they don't know what's causing it doesn't mean the problem for you goes away.

Where are you and what hospitals have you been to? Someone on here may be able to give you some locally relevant advice as to who has helped them and point you and your GP in the right direction.

Don't give up. You need to get the help you deserve!

Cx

Your story sounds a bit like mine - I was told stroke initially, then migraine. Also taken down the mental health route but because I was (understandably) depressed after losing two babies years ago the neuropsychologist leapt on that and said I am depressed even though my husband said I have seen her depressed and this is not depression.

And yes my mouth does droop - I dribble my drinks - too much information - lol! And giving anyone a kiss is difficult so I guess the muscle/nerves around my mouth are affected.

Try to be pushy as others have said. You need more help. I too have never had a spine scan and I'm trying to pluck up courage to ask for one. Don't let this go on as long as I have.

Lynn.

Hi Zoe. So sorry you've been having such a terrible time letdown

I agree with the others - time to get assertive. And if your GP won't refer you to a new neurologist, then you need to get a new GP! You also need a spinal MRI, as you said. I'm amazed no one's done one already, given your symptoms.

Good luck!

Karen x

 

Hi Zoe

you poor, poor thing. What an ordeal you've been through.

It's completely not right. As the others have said go back to your GP or another GP if that one won't listen and take someone with you. Try and be calm and structured - maybe don't even mention the MS thing even.

Tell them the number of times you've been admitted and the fact you've seen the mental health team who've given you a clear bill. Tell them the number of years this has been going on and the activities you can't do.

My neurologist is terrible and doesn't explain a thing and everytime I've gone back with a new episode he pats me on the back and says your fine the MRI is stable - so I've gone to my GP and am waiting for a second opinion. Push and push - keep going back if you have to becuase its your life and health at risk so you musn't give up.

You really need an MS neuro referral, some routine bloods if they haven't done already aother MRI and maybe even a lumber puncture and some evoked potentials but to name a few.

I wish I could say or do something to make your situation better. It infuriates me when doctors take the easy route and say it's stress/anxiety/mental health.

In my line of work - I work for the NHS. We fully investigate even when we know it's a clear personal issue. It racks up a big bill in the NHS but at least we have proved everythign being normal and aren't sending some poor soul on somebodies poor judgement home when they have something terrible.

Whatever you do don't give up. Whatever this is MS or something else neurological it's not in your head.

(hugs)

Reemz

X

helloHi everyone, thank you so much for your replies! I really appreciate your support and am relieved to read that you all think I should be pushing further for more tests etc.

I live in Somerset and have seen doctors at yeovil hospital (who come from taunton) and also been to southampton general (where they were very concerned about me, got my notes, saw a past history of depression and the attitudes changed dramatically from there)! I also saw a lovely dr in winchetster hospital, who was the one who examined me and said MS relapse straight away (looking at my condition there and then and not referring to any notes)!

Does anyone have any suggestions as to good neurologists?! I'm even looking into getting a referral to the London National Centre of Neurology, because I am so desperate! crying1

Also, does anyone take any really good medication for pain? I'm currently on 600mg Gabapentin 3 x a day plus additional naproxen, paracetamol and codiene as required, but my spine is so severe, the pain is even breaking through all that. I don't think it's a muscular pain, it feels like a deep, drawing ache in my bones almost.

Anyway, I will sign off for now as I'm concious of writing another short story!

Thank you again for all your help, any advice you can give me is greatly received.

Love always

xZoex

Hi Zoe - what a nightmare you're going through!  I really feel for you... As you live in Somerset,  have you thought about getting a referral to Frenchay?  They have an MS centre there.  My daughter was admitted there when she first became ill, and we're due to go back in a few weeks...

Good luck, and keep on pushing!

V

Hi Zoe

I was being seen at the national neurology hospital but didn't have a great experience with my neuro there though I know of a couple of others that see different doctors in that department and have a had a better experience. I've now been referred to charring cross on GP recommendation and the few people on here that I've asked said their experiences have been quiet good.

Maybe create a seperate post (to make sure enough people look and respond) asking people to write down the hospital they go to only if they've had a good experience and if they see an MS specialist there. You can always PM people seperately if there's a hospital in a location thats travalable for you that you want more info on at the end.

Good luck Zoe - hope you get somewhere with this. Don't give up.

Reemz

X

 

Hi, Zoe I was dx from Yeovil hospital I will pm you Karen xx

Zoe: you are currently on only half the max dose of gabapentin (the max is 3600mg a day) so maybe ask your GP to increase your prescription?

Kx