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more confused than ever!!!!!!!!!!!!!!!!!!!!!!

Hi, havent been on here since last November after I saw my neuro and he said he was 95% sure I had MS. Was due to go back and see him next month but after suffering for the past 9 weeks with constant dizziness and balance problems i went to see my GP who, after checking me over, decided he would like me to be seen by the neuro earlier,due to what he discibed as “drifting” on my right side ( all i wanted was some meds to help releive the dizziness) any way I received an app and went to see my neuro yesterday. On entering his room I immediately felt awkward. he said “what are you doing here I didnt think i was going to see you till next month?” i explained that my GP had written to him to see me earlier. he had no record of this and asked what problem was. i explained about dizziness and unbalance to which he replied " nothing different to what youve had in the past then?". he also said that because MS had been mentioned to me he thought i was being paranoid about symptomns!!! He then went on to say that there was no significant evidence to say I had MS and was going to discharge me??? What!! over the past 12 months I have been told it is “probable MS” to “isolated episode” to “95% sure” to now being discharged. Ive had MRI scans that showed changes. Negative VEPs and LP. Now I am feel so low and confused. He made me feel stupid and as though I was making everything up. I was having these symptomns long before MS was even mentioned to me so I can assure him I am not making this up. Now i dont know what to do, why am I getting these dizzy spells and unbalance? now I feel I am back to square one and not knowing where to turn!!! aaarrrrrrrrggggggghhhhhhhh!

Oh yeah and he also said he only wanted to see me in his clinic again if I a) lost use of either arms or legs or b) i lost sight in either or both eyes!!!

GET YOURSELF A SECOND OPINION!!!

This man is not fit to be seeing MS patients. Seriously. Come back if you lose the use of arms or legs or the sight in at least one eye? WHAT THE ****?

Your GP will be p’d off too I’m sure. Use the “Near me” function on here to find the name of an MS specialist for your GP to refer you to instead. I cannot believe that this neuro is an MS specialist, but if he’s listed as such, then he doesn’t deserve the title.

For vertigo, you can try stemetil (your GP can prescribe it). A neurophysio can also show you exercises that really do help. I always remember them as Catherine Cookson(!), but that isn’t what they are called… ah! Cawthorne Cooksey (thank you google!).

Whatever you do, do not take even one word of what this so called neuro said to you to heart. He was talking RUBBISH!

Have faith. See your GP and find yourself someone who actually has a clue.

Good luck!

Karen x

hi Rizzo, apparently he was an MS specialist???

He really seemed peed off to see me there! doesnt do much for your confidence!lol!

When I came home, the longer I thought about it, the more angrier I got. I just cant beleive the conflicting information I have been told! as if things arent confusing and scary enough! I am off to book an appointment with my GP and will ask to be refered to a different neuro at a different hospital, I dont mind travelling to see the right person. he was disgraceful! will keep you posted and thanks for your advice. Hope you are well.x

oh and the white areas on my MRI scan could have been caused from my smoking some 17 years ago???

OMG! That’s TERRIBLE! How on earth would an MS specialist think that you need to go blind to warrant being seen?

Speechless!

Be careful about who you get next. Most specialists work in more than one hospital. You want to make sure that you see someone who won’t just automatically agree with his colleague - lots of politics and bum-covering in the world of consultancy :frowning: So ideally go to a hospital that this guy doesn’t work at and see someone who doesn’t work at the hospital you went to. Getting confusing! I hope that made sense?!

Good luck!

Kx

I know, what an idiot!!! some people dont have any compassion and think about how this will affect the patient!!! any ways I will do some research and hopefully get see someone completely detached from the neuro I have been seeing. Obviously I dont want it to be MS but on the other hand something is definately wrong and the sooner I know what it is the sooner I can come to terms with it and get on with things. XXX

Poor you! This guy kind of sounds like my neuro and he’s an MS specialist too! Mine said I was pessimistic and when I tried to tell him about my symptoms (from a concise list of 4 main ones) he started spouting and even said well do you want to be cathetirised (I’m sure there’s some intermediate steps for urinary problems before that).

Completely get a second opinion! You should not have to wait for something major to happen to you before somebody sits up and takes notice. I work for the NHS and there are some fantastic people that go beyond the boundaries to do there job so it’s not all terrible - but there are some that are more interested in there private practice, retiring, research etc than actually helping patients.

People like these neurologists should be named and shamed for there bad bedside manners - being qualified isn’t just about being educated and having a degree it’s about good people skills too.

Oh and your comment on smoking made me fume- my neuro said the pain you’re getting on your L is because you’re not exercising correctly you need to stretch, your getting old (I’m 29)… I do yoga, dance and try and stretch constantly through out my day at work… he was basically trying to fob me off.

Best of Luck, keep us updated

Reemz

I agree. Anybody know if there is anything actually stopping us from doing so? Legally, etc? Its absolutely appalling what some of them get away with.

Hear hear!!!

I totally agree too!!!

It seems to me that when you look at NHS Strategies they are almost always swayed by government pressure - prevention in particular. I wholeheartedly agree that things like smoking, obesity, alcohol, general wellbeing etc should be addressed but but not to the point that so much vital resources are thrown at it!

Certain diseases/illnesses also seem to be in or out of ‘fashion’. - from where I’m standing at the moment (or rather lying!) neurology doesn’t seem to be one of them! xxjenxx

Hi your story has similarities to mine!

I am wondering wherabouts you are and if we`ve seen the same numpty neuro!

Ive been having very PPMS-like symptoms for 14 yrs now. Let me give you a run down of what Ive been subjected to;

1999…saw 1st neuro.he said he couldnt tell me what was wrong.............but it wouldnt get better…duh!

After lots of tests, which all came back normal, he said it could be MS.

2003 different neuro…95% dx of PPMS

2010…different neuro…not MS at all…but HSP… a rare genetic disorder

2011 …different neuro…not HSP, but more likely PPMS

2012…not MS…but SP…cause unknown!

I see the MS nurse next friday…but why if I don`t have MS?

I`m going to ask for a referral to DR. LILY, in Leeds. he is a top MS specialist.

Wish me luck. You too. I think you need to ask for a second opinion. Are you in West Yorks by any chance?

luv Pollx

hi everyone, thanx for all your comments, i would love to name n shame but like hunny said not sure of the legal implications of this. Poll your story has lots of similarities to mine, but you seem to have been suffering for longer than me, I am from the east midlands so not west yorkshire way but seems like there are lots of neuros who practice in the same way!!! i have been to make an appointment today with a GP that I found very good and helpful (the one who refered me for an earlier app) onlt to find that he left at the end of last week. I feel like i am hitting my head on a brick wall, thinking of going private, really cant afford this but am at a bit of a loss as to what to do. x

And they say doctors are supposed to care how uncompassionate was your neuro I think I would have cried. We need so much understanding and care. Don’t despair there are excellent neuros out there like my one in Newcastle - he’s a gem. Please please try to find yourself a better neuro. Perhaps people from your local ms group might be able to help you find one min xx

Hey good luck with the second opinion…the first one well I can only echo others comments!! he should not be practicing as and Ms neuro…

The last time I saw a neuro was 5 months after my RTA in 1994 (east mids) and the exxperience was not a positive one…he was rude…arrogant and lets just say my normally low blood pressure went through the roof everytime I had to see him and infact when on the ward i refused to see him…he was truely vile…he missed so much with me due to his arroganmce and when my sister told him i was fit and healthy/mobile… before the rta he just wouldnt accept this!! he missed the fact the i was walking around using a stick…which unknown to me at the time was 2.5 inches too short…(physio mistake)so it was affecting my gait and adding to my existing probs…what a numpty…I do hope he is no longer practicing!! lol seriously there are equally very good neuros out there…so am sure if you picl the right place…youll find a gem and with the support of your gp…should be good…

do let us know how you get on…

x

hi scoobie,sounds like youve had a rough time, hope you are doing well now, that desription sounds just like the guy I saw, on both occassions he was damn right rude and arrogant, I would hate to see him again under any circumstance. i am now on the hunt to find a good neuro with a bit of understanding and who listens. Looks like my first hurdle is finding a GP I can trust at our ever changing surgery!!! it seems like im taking one step forward and two back at the moment. Ah well onward and upwards.x