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1 st neuro appointment

Well the neurologist was a nice man , who listened to what I had to say . I explained my symptoms to him and he did some reflex tests . He told me my reflexes were not quite right on one side .He wants me to have a MRI scan of the spine and brain . He said the wait is normally about 6 weeks but he is going to see if I can have it done before then . He’s also put me on detrusitol tablets ? Do any of you on here take them ? From Sam

Hey Sam - yes I’m on those bladder tablets. I also self catheterise and take desmoppression which stops me getting up in the night Hugs Min xx

Ok hopefully they will help a little then . I did have them about 7 years ago as I had a bad bladder infection . The neuro seems to think my bladder issues may be linked with the sensations I’ve been having . He said something about maybe I had a attack then and then it’s settled for 7 years and now I’m having another one these past few months . From Sam x

Ok hopefully they will help a little then . I did have them about 7 years ago as I had a bad bladder infection . The neuro seems to think my bladder issues may be linked with the sensations I’ve been having . He said something about maybe I had a attack then and then it’s settled for 7 years and now I’m having another one these past few months . From Sam x

Hi Sam,

It sounds as though you’ve not only bagged yourself a ‘human’ neuro but also one who’s proactive too - this is fantastic news

Hopefully it won’t be much of a wait until you have the mri done and all things dangly crossed that this will then give mr neuro a clearer idea as to what’s going on.

Debbie xx

Hi

I am a newbie to this site and have my first neurology appointment on Monday.

I’ve been in limbo for the past 10 years or so with no GP (up until now) seeming to take my symptoms seriously.

My symptoms seem to be getting progressively worse over time and more and more frequent.

I have overwhelming periods of fatigue to the point where I just want to sleep all day, but then have nights where I can’t sleep at and it feels like I have “electricity” running through my brain and it won’t turn off, cognitive problems like not being able to think clearly, forgetting what I’m saying halfway through a sentence, can’t work things out in my head, leaving my car door wide open when I’ve gone out in it :-)! Basically think I’m going mad!

My eyes are sensitive to daylight, even when its not particularly sunny. I had Uveitis in 2006 and was prescribed steriod eye drops. My vision is very blurred and I have high pressure in both eyes.

I get pins and needles in my hands and feet and sometimes my feet feel like blocks of lead and are stiff and painful!

I am dreading this appointment (mainly due to the fact that I’ve had negative experiences with doctors thus far) but really feel that I need to make the most of my time with the neurologist and get someone to actually listen to me!

I’d be really grateful if anyone could give me some advice on how to approach the appointment and whether to take a list of the symptoms I’ve been experiencing (I haven’t actually been keeping a diary of specific dates and times I’ve been getting these symptoms) and what to expect from the first appointment.

Thanks v much!

Hi Brecca and welcome

You’re not going mad but I think most of us here know that feeling only too well so you’re in good company! You know that something isn’t right with your body and your new GP clearly thinks that your symptoms warrant an investigation too, so now the ball has started rolling…

It’s a good idea to start making a list of your symptoms particularly the worst ones. Try to keep the list as brief as you can but without leaving anything out - take it with you to your appt. Maybe take someone in with you too, a friend or relative.

He’ll ask you about your medical history and examine you - everything you can tell him will help, so as well as going through your list with him, give him a copy of it too. He should attach it to your file.

He may then want to order further tests or an mri. There are lots of conditions that have the same or similar symptoms to ms and these all need to be ruled out - there’s no ‘one’ test for it, so try to consider each test as another step closer to finding out what’s wrong.

There’s only so much time allocated to each slot so stick to your guns and try to get as much out of the appt as you can!

Good luck - let us know how you get on when you get a mo’

Debbie xx

Yes i felt very confident in him Debbie thankgod .So hopefully wont have to wait to long for an MRI .

Oh Brecca 10 years thats along time i hope your appointment goes well on monday . I was nervous as i thought the neuro would just think it was nothing and send me on my jolly way ,and i just hate feeling like this .

I took along a list to my app, as i didnt want to forget anything.When he asked me about my symptom history it came in handy to have it in front of me .Just go in there and and explain your symptoms and he will do some balance and reflex tests .

let us know how you get on .

Ive woke this morning not feeling great .My hands feel so stiff and 2 of my fingers are really numb ,vision not great,and the feeling of water dripping all over my back .But on wards and upwards im going to try and forget about it and enjoy a nice hopefully sunny day with my kids

from Sam

Hi Debbie / Sam.

Thank you so much for your comments, that’s really helpful.

My partner is coming with me to the appt on Monday for support & to make sure I don’t forget anything … which is highly likely!

I’ve done a list of my main symptoms so will take that along with me.

Sorry to hear you’re not feeling well today Sam, I know how difficult it can be especially when you’ve got kids.

Will let you know how I get on.

Thanks again x

You’re welcome Brecca

Buckets of luck winging your way!

I shan’t forget 'cos I’ve also got hospital Monday too - look forward to hearing how you’ve got on

Debbie xx

Let us know how you get on as well Debbie :slight_smile:

Will do Sam

Have a great day in the sun with your kids - a bit of sunshine and frivolity is a great way to perk up our peckers

Debbie xx

Hey Brecca - I hope your appointment goes well. Yes a list of symptoms and for how long is good. I remember getting really frustrated with my neuro when he dismissed some of my symptoms as having nothing to do with ms and he said I was hypersensitive. So be prepared. He has since in future appointment ts relented and admitted some could be ms. Also one appointment they tried to fob me off with seeing his junior. I stood my grou d and said I wasn’t comfortable with that and wanted to see my usual neuro. Also do ask for a copy of the letter that is sent to your gp so you know exactly what is being reported. Yes having someone there with you is always good to remember what has been said. I actually always write the answers to my questions down - take a list - even if it slows the appointment. It is after all my appointment and I won’t be seen again for 6 months. I always ask my husband if he has anything to ask the neuro. After all the ms affe to him too. So ok I m rambling now!!! Good luck hope it goes well do let us know Hugs Min xx

Hi guys

Well the neuro appt didn’t go as badly as I thought!

At first, he appeared to be quite dismissive of my symptoms, putting them down to side effects of the anti-depressants prescribed by my GP. He also seemed to want to rush through the appointment, but I stuck to my guns and brought out my list, slowly going through each symptom one by one, ensuring that he took enough time to listen to my answers!

(Thanks for the advice about the list … this really helped, otherwise I would have got flustered and forgotten to mention half of them)!

Once I explained that I had been having these symptoms for the last 10 years or so and had been prescribed several kinds of anti-depressants, with no noticeable effect, he concluded that my symptoms could be due to CFS and proceeded to advise that I should get a job, as being a full-time mum causes the brain to get underactive, falling into a pattern of routine and therefore making fatigue worse lol! If only it was that simple …

I explained that I did work full-time previously, but struggled to cope due to cognitive issues and overwhelmimg fatigue. He said that he didn’t mean I should work full-time, but just do volunteering or work part-time!

He then went on to do some tests to check balance / sensory reactions etc:- I had no feeling in the bottom of either foot, is this normal?! and my knees were very stiff and painful, he said they lacked lubrication in the joints.

He then concluded that my symptoms could be due to a vit B12 or vit D deficiency or MS. I therefore had some bloods taken and he has ordered (is that the right word?!) a brain MRI.

I’ve read some posts about whether these should be with contrast or without? Please could anyone help with this as I’m not sure what it all means.

Anyway, I am glad that I have made some progress today and that further tests are going to be carried out to find out what’s wrong. I know my body and can tell that something is not right. The appt overall was not too bad, apart from the odd degree of sarcasm here and there!

Debbie hope you got on okay today with your hosptial appt.

Sorry if I’ve gone on a bit.

Thanks again xx

Hi Brecca,

I’m really glad that your appt went okay and that they’re now conducting a proper investigation into your symptoms. Blood tests aside, an mri is normally the first pitstop and this can be done with or without contrast (which can enhance the scan). Not every neuro requests the contrast and it won’t be used if he hasn’t asked for it either. I didn’t have contrast and abnormalities still showed up on my scan.

I know it probably feels like you’ve already had loads of blood tests done but each test you have helps to whittle down the list of possibilities…You definitely made some progress yesterday - fingers crossed you don’t have to wait long for your appt to come through for the scan. I don’t think I waited that long.

When I saw my neuro at the end of April he upped the dose of pregabalin to the max with a view to changing meds completely. It’s also under debate whether I’ll be continuing with the copaxone (dmd) - both of which I’m seeing him about in August. So all things considered, I didn’t really expect that much from the appt with my nurse yesterday.

As it happens though she’s referring me for a neurophysio assessment which I’m quite pleased about. We both agreed that it’s probably unlikely that I’ll stay on the copaxone and as the neuro has already said, he’ll want to monitor me completely free of dmd’s for approx 6-12 months before we make the decision whether to try Gilenya or Tysabri next.

I was quite ill with an RTI at the end of March/April so she reiterated that it could take me up to six months to recover from that - ms wise. I’ve had constant health problems of one kind or another for well over a year now so that’s no surprise! But I’m pleased that I’m having this assessment done - every little helps as they say

All things dangly crossed that you get your date through soon Brecca!

Debbie xx

I’m pleased your appointment went well . That’s good he is sending you for an MRI , hopefully you won’t have to wait to long for an app. Did he say how long you might have to wait ? Sam x

Many thanks both.

No didn’t say how long it might take, but I was referred on 30/3 to neurology by GP, so hopefully won’t have to wait too long now for referral x

I just got my MRI app through for next thurs ,i really thought i was going to have to wait a long time .

Sam x

That’s quick lucky you. Hope it goes well and let us know how you get on. Xx

Great news Sam!!

Hopefully things will start to pick up a bit in speed now.

Debbie xx