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1st neuro appointment - is this usual?

Hi everyone

This is my 1st post here as I’m right at the start of possible diagnosis. I’ll list below a very brief chronology of how I came to be referred to a neurologist:

August 2011 - right foot drop and right weak hand (Dr N said to keep an eye on it as could be MS)

March 2012 - foot drop/tripping problems while walking on holiday (Dr G said to self-refer to podiatry)

April 2012 - urinary urgency (kept to myself as was embarrassed)

July 2012 - balance/falling problems while walking on holiday (Dr G said to practice washing windows standing on one leg!)

January 2013 - intention tremor in right foot while driving (Dr N referred me to Neurology)

Anyway, I didn’t get to see the lovely Dr N till May 2013, then the first referral went to the wrong hospital which then sent an appointment to the wrong address! So I finally had my first neuro appointment last Friday, nine months after my last new symptom. The neurologist was lovely, and when he did the neuro exam, my foot tremor showed up as well as something a bit strange about my hand, and he also thought there might have been optic nerve changes. Whilst not particularly good news, it was certainly vindicating after feeling like I’d been treated like an idiot by Dr G first sending me to podiatry and then telling me that I should practice standing on one leg washing windows!

At the end of the neuro appointment he made another follow up appointment for 4 month’s time and said he was going to get me in for a day at the hospital to have an MRI head and spine, lumbar puncture and optic nerve tests. I also had lots of blood. The haste to get me in for such a battery of tests really surprised me. I don’t know when I’ll be called in as it was only 4 days ago that I saw him, but I was expecting things to progress much slower than this. Am I lucky to be getting this response or should I be concerned? Can anyone tell me if this is usual?

My symptoms have been fairly mild and I’ve not been very worried about them, but would like a diagnosis.

My partner of 23 years died very suddenly and unexpectedly 4 weeks ago as a healthy 49 year old. This is occupying far more of my thoughts.

Hello I’m so very sorry about the loss of your partner and having to cope with that as well as all these investigations must be extremely upsetting and stressful, be kind to yourself xx I think different hospitals do things slightly differently from each other. For example, I saw my Neuro, waited a month for MRI, then waited till the following year for my diagnosis and 2 weeks ago I had my LP - all over the place!! It is good that you are having tests done on the same day as it will mean just one stressful day rather than it all being broken up, but that could be my preferences coming out here! It sounds like you have a good Neuro, who is being thorough and although not nice for anyone to be under a Neuro having tests, I think this is a positive scenario here. Given your circumstances, I think organised thorough testing is what you need. My best wishes for your tests. My only bit of advice is to try and keep an open mind about what could be going on, there are so many MS mimics which is why it can take so long to get a diagnosis. Sam xx

Thanks Sam for your kind and considered response. I seem to have become thoroughly confused with the login process and now seem to be registered twice so I am the same person even if my username looks different… I am trying hard to be kind to myself, but I’m unsure for instance of when I will be ready to resume work as noting like this (bereavement) has ever happened to me before. Similarly, and with remarkably bad timing, I have no idea what to expect with the whole MS investigation process. The fact that whatever “it” is has been lurking around in the background for two years at least, whilst certain of the GPs at my surgery have made very light of it. When I finally get seen by the neuro he tells me that I will be called in for the full battery of tests before the half hour is out. It just rather concerned me as I thought it would be the MRI followed by other tests if they found lesions, not the whole lot all at once. I suppose I should consider myself fortunate that he is being so proactive and speeding up the process, whatever the result turns out to be. Thank you for your kindness X Sarah

Hello Sarah.

Firstly, I am so sorry to hear of your loss. I can’t imagine how difficult and stressful it must be to be having all these tests done whilst you are still in mourning. I send you massive hugs. xxx

Secondly. We have a lot of similarities :

Like you, I have just seem my 1st Neuro, like you I had a looong wait for the appointment and like you, I was completely freaked out by the fact I will be admitted into hospital very shortly for a barrage of testing. Having had the week to think about things rationally, I do feel a lot better. What also helped was a friend who is a speech therapist and who’s husband is a neuropsycologist explained to me, that when neurology finally get their hands on you, they like things done speedily and efficiently. And if that means getting all the tests done in 1 day and getting it done as soon as possible then it can only be a good thing. When I told her that I the neuro said “within the next couple of weeks” she said, “oh, that long” I totally hear what she is saying and I have taken a great deal of comfort from it. If it was anything more urgent, they would have admitted me that day or at the very least, within a couple.

So, please Sarah, take a deep breath and try not to worry too much (I know, easier said than done) and take comfort from the fact you do not have to wait for another 9 months.

Like you, I am having an MRI and optical nerve tests. I am not having an LP so I can’t comment on that, but if you want to go discuss the others, please don’t hesitate to pm me.

Thirdly - Welcome to the Forum!!! It is a wonderful place full of teriffic people. If ever you need a pick me up, these are the guys to help.

xx

Hi Sarah I saw my neuro 1 week ago and have mri off head and spine booked for 3 weeks and had loads of bloods done. Follow up with neuro in 3mths to see what will happen. Welcome to the forum and sorry for your recent bereavement A xx

Hi Sarah, a warm welcome hug! My condolences fir your loss, also. There is a great deal of support here. I’ve also used the site’s helpline and can recommend it if you need to talk rather than type. I’m awaiting my first neuro appointment now. Be gentle with yourself. You are surrounded by loving support :heart:

Hi Sarah, I’m quite new here too so can’t be of much help, but I wanted to say how sorry I was to hear of your loss and then to be going through this too. My story is a bit different as I was admitted to hospital with stroke like symptoms so I had all the tests done in hospital. Personally I would prefer to get it al over with in one go rather than waiting and worrying. I wish you all the best.

I find myself lurching back and forth between thinking about nerve issues and thinking about my partner, Richard, who I spent half my life with and with whom I was planning to grow old. The last words we spoke to each other the night before he died were that we loved each other. It was so sudden that there was no preparation for it. He should have been here.

The MS thing is on my mind a lot. It would help to know when the day of tests as going to be. I’m not really worried, at least I don’t think I am, it’s just that I’m slightly fixating on it but if I’ve learnt anything so far, it’s to be patient, but as everyone knows, its easier said than done!

The support I’ve had over Richard’s sudden death has been absolutely amazing, and it’s heartening to find that this forum is such a kind place too. Thank you for your kind welcome and supportive words.

Sarah xx