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Neuro app tommorrow

I finally have my neuro app tomorrow and iam a bit worried . Do i show a copy of my discharge letter from hospital(when i was admitted with right sided numness etc ) as it says iam well known to previous neuro ( i saw him three times ) and 2 of those times i was in 5 mins just enough for him to say see nothing wrong take care sort of thing .

I was referred back to neuro from a physio who has wrote a big referral. She wasnt happen with what happened with last neuro although as ive read before it could mean nothing lol.

My app is early tomorrow morning and although i have listed some symptoms but as last neuro didnt even look at last one ive downscaled it .

Any advice would be appreciated on how to move forward with neuro .

Many Thanks

I think I would tell him that I had an episode of right-sided numbness lasting X hours and keep everything very factual: NHS Direct told me to go to A&E, I was admitted, two doctors said I needed a scan, another neuro examined me the next morning and, as the numbness was wearing off, he decided it wasn’t necessary. (I hope that’s you and I’m not getting you confused with someone else???)

I think it’s usually sensible to not play the blame game (e.g. he didn’t listen) and, if need be, take the blame yourself (e.g. I must not have explained myself properly). That way the other neuro saves face and the new neuro doesn’t feel so obligated to back him up without checking he was actually right or not!

Re symptom list: it’s usually best to stick to the most serious / obvious. There’s just not enough time to go through everything more often than not :frowning:

I hope it goes really well!

Karen x

Ty so much Karen for replying ,

Iam back from neurology had to have bloods done again ,definately had the feeling of deju today neuro says definately not MS he doesnt know whats wrong and said he will yet again do a brain mri and neck mri . He said it could be anything chances are its not a neurolgy problem . I was told by physio that they would have a copy of previous mri , bloods etc he had nothing .

I have left feeling like what’s the point .

He said from start of symptoms over a decade ago til now if it was a neurology problem i would be in a wheelchair by now and alot worse than iam .

I would like to thank everyone who has given me advice and help on here .

Good luck to everyone in limbo and also be positive x

HI, I am quite new to all of this myself and was only diagnosed in September last year. Yesterday was the 19th aniversary of my first synptom, woke up with no sensation in my right leg, hot, cold, struck a pin in it, nothing. I have been back to the doctors a few times since then but it wasn’t until I went back in August last year with some new symptoms that my GP took me seriously. So, the point is, there is a point. I think there comes a time for all of us where the medical proffesion have to listen, maybe it is one synptom which they feel they have to investigate and can not ignore. So don’t give up, if you feel you need some help then you should ask. Good luck to you also and I hope you get some answers soon. And you can tell your Nuerologist you know someone who was over 18 years from first symptom to diagnosis, who played football and ran for an athletics club and is still thankfully not in a wheelchair!!

Hi Gorrest wow thats a long time . ty for replying . Its a physio who referred me back to neuro also when i was admitted a few weeks ago with right sided numbness 2 out of the 3 said neuro problem . When is the time when you say enough is enough with the tooing and froing which has been for over a decade ( first mri was 13 years ago ) .

It seems i ignore it and just get on with my life then something else happens . I mention it to gp and go back into (the system) then back out again .

I have an urology app on friday see if they come up with a reason why i have bouts of incontinence if they say its a neurolgy problem i will scream.

What’s good is at least he has asked for another mri and the bloods he has asked for i don t think i have had them before .

Ty everyone for helping me x

Hi, yes it is a long time but like a lot of people on here keep saying, it effects us all differently, I have been very lucky for a long time. But it was bladder control problems plus L’hermittes sign that made me go to my GP last year. Maybe worth thinking about what they are going to MRI, head, neck, spine or all of them, I am no expert but I think it is important to get them all done, maybe worth posting the question on here or reading rizzo’s post on the brain and MRI, it is a must read anyway to be honest. I think it is very difficult to force the issue with the doctors but I think you are making progress with getting another MRI, just make sure they MRI the correct parts of the body, maybe that is something you can have an input on, again I am no expert but whats the point of scanning your head and not your spine after 13 years of issues. Good luck for Friday, but get ready to scream! Let us know how you get on.

I have had mri 's on brain ,neck and spine all done last year . Spine was done in oct after having episode of incontinence but today he had no results to go by so thats why i had to have a brain and neck one again also he will try and get results from a nerve conduction study that i had in nov and if he can t get it i will have to have one of those again too .

If that makes sense .

I know it must feel like starting all over again, but at least he is sending you for tests - if he didn’t think there was anything wrong, he very probably wouldn’t. So, it’s a new start at least.

It’s absolute b******* about you being in a wheelchair by now if it was neurological though. Maybe he thought he was being reassuring, but it’s a daft thing to say: many people with MS never end up in a wheelchair, even after having MS for many decades!

Hopefully these new tests will shed some light for you at long last.

Kx

Hope you get some answers soon. I had my first symptoms 10 years ago, I lead a very active life, diagnosed in August last year and am not in a wheelchair, in fact I’m hoping to take part in a half marathon this autumn!

Hairbear, good luck with the half marathon, can’t wait to get back myself, got a target time in mind?

Thanks GorrestFump! For years I’ve been chasing a sub 2 hour. The closest I got was 2 years ago when I did 2:04. My pace has slowed a lot since the last relapse so for now I’m just slowly building the mileage. If I manage the distance I’ll be happy, if I match my pb I’ll be chuffed, if I beat my pb I’ll be ecstatic!!! I have 4 months to train… Do you run still?

I haven’t run for a while but I am looking to get back to it soon. I am having a few problems with my ballance after a bout of Internuclear ophthalmoplegia (INO, I can’t spell that again!). It is just something I think is always worth mentioning to people who are newly diagnosed or waiting diagnosis. I appreciate that a lot of people are not able to exercise or run but it annoys me when I hear Neurologists talk about wheelchairs, as if it is an inevitability that if you have ms that’s where you will end up. My best half marathon was at Keswick where I ran 1 hour 41 minutes, Bramton to Carlisle 10 miler in 68 1/2 minutes and my fastest 10K was 41:30. Always dreamed of a sub 40 10k bet never managed it, yet! So, get the miles in and do some speed work during the week. I don’t know if you are a member of an athletics club, if you are not, then join one, you will be amazed how much progress you make, and don’t think that athletics clubs are full of international athletes, we have many, me included, who are around the 2 hour mark for a half marathon.

Thanks so much for the encouragement! And blimey, you’re fast!! I did the London marathon last April, 2 months later I started my next relapse which led to diagnosis. I’ll never forget seeing my gp and asking if it could possibly be MS and he just said “no, it won’t be MS, you wouldn’t have the muscle strength to run”. He referred me to a neuro (reluctantly) saying it was just a sporting injury! I consider myself very lucky to be able to keep active, I know it’s not that way for everyone but I have learnt an awful lot about this condition and I’m determined to keep doing whatever I can. I’m not a fast runner but every time I put my running shoes on I feel like I’m sticking 2 fingers up to ms. My local club meets in the evenings (I used to be a member) but I prefer to run in the morning or daytime when I have more energy (I also have a habit of falling over when its dark!). I’ve kept in touch with a couple of members though and we usually meet at the weekends for a plod. Never been a fan of speed work but I know I need to do it if I’m to reach my goal. I hope things settle down for you wuth your INO and your balance and that you get back out there soon.

Thanks for the encouragement - I’m impressed, those are great race times! I ran the London marathon last April, 2 months later I started the relapse that led to diagnosis. My neuro has been great, he told me to keep doing whatever I can but to learn to pace myself. It was my gp who fobbed me off by saying there’s no way it’s MS as “you can’t run with MS!” Needless to say, I’ve not been to see him since! I used to belong to a local running club but they meet in the evenings and I’m not so good in the dark - I have a habit of falling over. I’ve kept in touch with some members though and meet them at weekends for a run. I go to the gym & do the odd spin class or swim. It’s been long slog getting my fitness back but I feel like I’m making some progress, slowly! I hope things settle down with your INO and your balance so that you can get back out there soon!

I admire anyone who runs a marathon, oh, hang on, no I don’t, I think they are crazy!! 26.2 miles is a distance which should only be attempted in a car, with a full tank of petrol and full AA breakdown cover. But very well done. Go back and see the GP with your medal round your neck!!

Hi all I saw my new neuro on 29 th may and was told I’d have a scan of brain and neck , he requested bloods which I had done that day . I have received a follow up app for 25 sept already , . Is it normal to receive another app so quickly ? I have only had the bloods done haven’t had scans yet . He said definitely no ms my symptoms are not specific to anything . Do I stay on this site seeing as its a site for ms ? He said if scan on brain and neck comes back normal I haven’t got a neurology problem .

Hi all I saw my new neuro on 29 th may and was told I’d have a scan of brain and neck , he requested bloods which I had done that day . I have received a follow up app for 25 sept already , . Is it normal to receive another app so quickly ? I have only had the bloods done haven’t had scans yet . He said definitely no ms my symptoms are not specific to anything . Do I stay on this site seeing as its a site for ms ? He said if scan on brain and neck comes back normal I haven’t got a neurology problem .

It’s normal if that’s what the neuro asked for (eg to see you once test results would be back or in 3 months). It’s certainly nothing to worry about. Of course you can stay on here :slight_smile: Karen x

I was told I’d be seen again in 3 months too after further routine tests. Got my appointment on Tuesday finally!

Oops, not sure what happened with my earlier posts - did my long reply and thought I’d submitted it but couldn’t see it anyway so I retyped a shorter one. Sorry about that - must be going bonkers! :-/ Destiny101 - no need to leave - keep us updated though.