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Shocking! Advise please...

Hi again… After months of poor treatment/ pain control and communication I had a follow up appointment at The hospital where I told the consultant I was unhappy with how I had been treated. He ‘blamed ’ the GP and was quite aggressive in his manner . I told him I was experiencing him as aggressive and he said ’ don’t play the psychologist with me !’ . He also said as my lumbar puncture showed no bands ( protein’) but I had two small lesions I would have an 80% chance of developing MS… Is THIS RIGHT? He also said he couldn’t advise me on things I should do to avoid another attack! ISTHIS RIGHT? Hardly surprising I am going for a second opinion referral to London instead of South East! Please help…any advise? X

Sorry, but without knowing your history, we have no way of knowing how accurate or otherwise the 80% is. 80% is often mentioned when someone has had one attack, has lesions on their MRI and their LP was positive. Having a negative LP reduces the risk somewhat I believe. There are no hard and fast rules about what does and does not trigger an attack. Anecdotally, stress is best avoided, but there’s no really strong evidence for that. Having higher vitamin D levels is also supposed to reduce the risk of relapses, but the evidence is not conclusive as yet because there are insufficient studies to date. A healthy diet might help. Stopping smoking should help. Ultimately though, if it’s going to be MS, another attack will be along at some point no matter what you do :frowning: Karen x

i may be wrong but i don’t think there are any ways of avoiding an attack as know one can tell when one is due

go for a second opinion and hopefully you will get a better neuro who will understand you and what’s going wrong

i can only say since i started on the journey sept '10 until dx of rrms last march i can honestly say everyone from the southern general in glasgow to my local health board have been really first class in all depts…i can even get my ms nurse no matter what day i call(exept weekends)…she does have some time off…but she is really on the ball when i need her as i’m on steroids last 4 days for my latest relapse and she took the time to call me late friday afternoon to just ask how i was…

so hopefully your second opinion will take you down a better route

baz

Just out of interest who is your neuro, mine sounds a bit like that & I’m in the south east!

Relapses can come out of the blue, example yesterday I was fatigued but generally okay and now I’m in hospital unable to see out of one eye and no sensation in my right arm and as far as I know there is nothing that can prevent relapses. And I have done a hell of a lot of reading into it. People claim that diet can change it and some nutters even claim it can cure it but these are usually from my experience people who don’t have ms or any knowledge about it. But there are some people on here who follow a diet that I cant for the life of me remember the name of and they say it dose help on a day to day basis. But I personally think think life’s too short to not enjoy eating what I want James

Yes shocking behaviour but by no means out of the ordinary. Neurologists have a god complex and in spite of this they do not know much about neurological disorders. I imagine this frustrates them, both not being god and not knowing

A neurological disorder has hundreds of mimics, neurological disorders can mimic non neurological disorders so it is not surprising your idiot neurologist said he/she can’t predict what will happen because it is a fact he/she cant. It is a tough job being a neurologist but I am not defending such idiotic behaviour.

Its hard to admit but i can tell you that giving in to the hopelessness that one experiences in limbo especially when treated so poorly by supposed professionals will not work with neurologists based on my experience. It will get you no where fast. Get out, get a referral to someone else, make any changes like have been said to diet, exercise, stress levels. And try not to worry about things you cant control, though it is difficult.

As far as the southeast, well this behaviour is not limited to any area, it is a behaviour which neurologists anywhere feel they have the right to exhibit, it has to do with their god complex. And, remember according to Cambridge University academics there are thousands of nerve pathways, 3000 to be exact in a piece of the brain the size of a pinhead so it is not hard to imagine why so many neurologists are frustrated and act out and why so many patients are in limbo.

Fortunately my nurologist is ok, I always take my wife to have a second person with me so I get all points across.

I think my second from last appointment I went away and did what they asked, see a councilor e.t.c problems continue go back and say 8 months of this I cant continue and being 27 in a stoke ward for 3 weeks will play with your head.

She listened and is running more tests. I agree with the above, there is so much involved in Nurology and it is so hard to diagnose things especially when there not text book and it is so involved, If my nuro hadnt had listend I would have sort a second opinion I am in essex, south east and going to Southend University Hospital. As hard as it is and as horrbile as it feels keep going. You cant play on things with them or stress anything to them you just have to try what they say and if they say nothing and give you no advice then moan on hear and seek a second opinion.

Hi, after seeing 12 neuros in as many years and with no definite diagnosis, apart from maybe it is ms or maybe it isnt or maybe its a genetic disorder or maybe it isnt, I voiced my discontentment in not being properly diagnosed.

After that i was made to feel as if I had made things up, that neuros had said (I always had a witness). I was refused an audience with an local ms specialist, and was out through repeat painful tests.

MS nurse suggested i complain to PALS.

I didnt. I`ve had enough angst. They won!

luv Pollx

Slight typo error;

Where I said I was out through repeat painful tests…I meant to say I was PUT through repeat painful tests

Pollyx

Thank you all so much for your responses…Rizzo - I have two lesions, seen as one attack of which I have had 3 months off work (I start back this week). My LP showed nothing but I was still told 80% chance of MS developing!

As I have said before on here - the treatment of many of us here has been shocking but not so lonely - thanks to all of you.

And I AM MAKING A FORMAL COMPLAINT TO THE HOSPITAL and will NOT be going back to them. I am awaiting 2nd opinion appointment in London.

I would suggest other people SHOULD complain - why should we put up with such poor treatment!!

x Dee