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You have to laugh - second neuro appointment

You have to laugh - second neuro appointment.

So I went for my follow up neuro appointment.

He said that I had several lesions (which I already knew), I also know that they are periventricular and juxtacortical (which I also know are specific to MS), and both of those locations fit the McDonald Criteria.

He said that he did not think that there was anything to worry about and said that my symptoms were probably down to my diabetes. I told him I don’t have diabetes. He said that my fasting blood sugar levels were high so I should go back to my GP. I told him that it was not a fasting test, as he sent me for the tests after my first appointment and as I was not told I would be having blood tests, I had already had breakfast. His next suggestion was to see my GP and ask for some ‘happy pills’.

He did then say that he would perform a lumbar puncture so I can only assume that he does think that there is a problem but he was just hoping that I would go away.

All seems pretty par for the course from what I have read on here.

Zippy.

Hi zippy, sorry your still having problems getting some sense, let us know when your lumber puncture is near, I am sure you will continue to get lots of support from the Forum. Don’t let it get you down too much (easier said than done). Hope you weren’t too upset when you left his office ((((hugs)))) take care C

Hmm he doesn’t sound like he’s very clued up on anything.

Gd luck with the lp x

Re your neuro (and a lot of the posts on here about GPs fobbing people off) a nurse friend of 30+ years told me that doctors don’t like to tell patients if they think it’s something serious unless there’s absolute undeniable proof - they always err on the side of the diagnosis being something ‘fixable’, ‘easy’ and common - until that is it’s overwhelmingly obvious. Although I do think in your case it’s quite shocking that the neuro said it was diabetes when you don’t have it… Diabetes is still a serious condition but gets the blame for a lot of symptoms. Also a lot of GPs seem to think that if they send someone away with ‘happy pills’, anti-d’s etc it’s a ‘quick fix’ - in some cases it is…

Hope you get sorted soon Zippy. I’ve found with these symptoms - in my case they come and go quite rapidly, it’s quite hard to get anyone to take you seriously.

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This is interesting as speaking to people (my wife, friends, other relatives) in my situation (waiting on 2nd scan 6 months after first which showed some areas of inflammation + some symptoms) everyone is saying…they would have said something if they were worried, they would have wheeled you in for more tests there and then. I know MS is not easily or straighforwardly diagnosed but I think the profession are potentially misleading people, after all with the good and bad of the internet if someone is worried they can find stuff out which of course may or may not support their worry.

To me this lack of expectation setting is very poor patient management. Yes we do not want to worry people unncessairily but with experience there must be a gut feel of from what I see there probably/maybe/possibly won’t be a problem. I cannot believe the variability in outcome is that wide, maybe I am wrong. Would like to see stats of people who have an MRI with some potential problem areas identified % that develop different conditions within 1-2-5-10 years.

The worse thing is you think these people are not treating you with openess and respect which creating a level of distrust in the early days is not good if you do have a long term condition to manage.

All the best

Chris

Hiya Zippy.

If I know anything at all about medicine - which I probably don’t - I have learnt that a neurologist will NOT diagnosis MS until all other avenues have been explored. Hence, blood tests, urine testing, etc. If other tests come back negative, then you and your neurologist will have no other option, and help will be found. (hopefully).

I’ve just had letter from my 2nd neurologist visit, stating that my scans meet the McDonald criteria, but I still need to go and meet a MS Team (highly specialised) to get a second opinion & discuss options. I am delighted in a strange way, as if this proves to be correct, I know help will be at hand. On the flip side, could it be possible that somebody has mis-read the scans and jumped the gun??

A lumbar puncture could be extremely helpful in your case. Mine was a little hit-and-miss, but then that was 18 months ago, and who knows what it could show now. If all your lesions fit the McDonald criteria, I think I would be pushing for more tests, & a LP.

Big Hugs

Sprout x

Just sneaking on here (I was diagnosed 15 years ago). I just wanted to say that I was diagnosed after one MRI. I did have symptoms that suggested I had MS but they weren’t very extreme, just some abnormal responses to reflex tests and some balance problems. Anyway, my point is that some neurologists will diagnose from what they see on one MRI and maybe you should get a second opinion, Zippy. Plenty of neurologists are just not very good and yours sounds like he is rubbish.

Sorry I have only just read the latest replies.

Right decision or not, after seeing my GP last week, she asked me ‘when you have the lumbar puncture, what would you hope the results would be, positive or negative?’

I left the surgery and though long and hard about this ‘trick’ questions. So feeling depressed and angry, I wrote her a letter (hand delivered to the surgery) telling her basically that she can stick her help where the sun don’t shine. I have cancelled all appointments and withdrawn completely from all services.

You could argue that perhaps they were then right to offer ‘happy pills’… maybe, but at least I feel that I have now taken back some control.

Good luck everyone.

Zippy x

Just seen your reply about the GP, Zippy. That’s awful - what on earth does she mean what do you “hope the results would be”? Of course you want a negative result - nobody wants MS or anything else for that matter, but you want answers to what’s up with you, you’re not imagining it, you just want an answer. When my MRI came back clear a friend of mine said “that’s good - everything’s okay and you can get back on with your life”! What? So the MRI is clear so all my symptoms just mean nothing and I’m making them up?

Keep going - keep bothering them - ask for another neurologist, another GP if you’re unhappy. I’m sorry but if you have lesions then there’s clearly something going on and they should be investigating further and not just suggest ‘happy pills’.

Dizzy x

Sorry zippy, I’ve just seen update too, what an absolute disgrace. I would be getting a second opinion from another neuro and changing my GP. Agree with Dizzy, there is something wrong, whatever it turns out to be, don’t give up. You must be devastated and very angry. Take care hun & lots of hugs C