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Awful experience at neurologists, feel very upset by him, not sure I want to go back.

Hi

Today a neurologist told me that from looking at my brain MRI scan he believes I “definitely do have a demyleinating disease,” and that it is either “mild MS” or “MS-like”… I have been referred to MS team.

This is obviously worrying, but what was most upsetting was how demeaned I felt by the whole experience. When I first saw him months ago, we spent a lot of time discussing the fact that I have OCD and depression; he had said he thought my symptoms were more than likely related to my mental health difficulties; that if I ‘got on top’ of my mental health the rest would follow. He said at the time that he thought it was unlikely to be MS, but would do an MRI 'to be safe / put my mind at rest". At the time I felt that he made it clear that he felt my symtoms were anxiety based; this was the main reason I delayed the MRI scan, I felt a bit ‘silly’ about it all.

Anyway, MRI has shown enough for him to refer me to MS team : he said it is 'definitely a demylinating disease": ‘mild MS or MS-like’.

BUT… his approach to it all made me cry. I feel awful, really really embarassed by the whole thing. When I went in I thought I might be able to discuss my physical difficulties in the light of mri results (at my previous appointment he had refused to discuss my concerns about MS symptoms; he said “if you try hard enough you can make anything fit”, ) but even today I felt like he was still dismissing my symptoms. . in my opinion, he seemed much more keen to make sure we discussed my mental-health issues than the MS. Which is silly, I already see a psychiatrist… I don’t need 2 of them! And he wasn’t very skilled at discussing mental health, just quite focused on it. I think he was trying to say, “yes, there is some MS here, but you are prone to worry, so try to keep it in perspective”, but actually, it came across as ', you’re overeacting because you have mental health problems… stop making a fuss "

I tried to discuss symptoms in my leg, but he said he really didn’t think my leg issues were related to the marks on MRI (which I dont understand, as the leg issue was one of the reasons the scan was done in the first place). He said my symptoms were ‘mild sensory’, so good prognosis (and I quote … “I would only be worried if something dramatic had happened, like incontinence” (although actually I have had a few episodes of incontinence last year, and have discussed it with him previously), so this just made me feel annoyed. I mentioned that another doctor had suggested gabapentin for pain, he said ‘its up to you’. He said if I was his nearest and dearest he might want to have me assessed to see if I was suitable for DMDs to avoid potential problems later on, but that he’s not an expert in MS,

I asked if I would need more tests (the only actual tests he has done was to hammer my leg reflexes last year, and the brain MRI that showed demyeination) . I asked if they would need to MRI my spine, he said categorically “no point”; I asked ‘why’, he said “because my physical exam of you was fine, there will not be anything to see on your spine”.

I asked when the referal to MS team would be made, he said it would a few weeks, there is no need to hurry because I have a very mild form of the disease’… although this is reassuring, I do feel that telling a newly diagnosed person 'not to worry, you will be fine," is maybe less helpful than saying, “it’s normal to feel worried”. At the end he said that he hoped he had ‘cleared things up for me’… but I still dont feel very sure about any of it (although he did admit he wasnt sure either, he kept saying MS wasnt his speciality, he specialises in Parkinsons)

I am quite worried about seeing MS team… don’t think I can cope with another appointment like that. I have been quite upset this afternoon, not so much because of the MS stuff (I had exected that as had spoken with gp about initial mri result), but more because of how the appointment made me feel… as though having mental health difficulties is shameful, and that since the ms is mild I am making a fuss.

Also, I nearly missed the appointment because the neurology receptionist sent me to the wrong waiting area (I was there for over an hour, waiting in the wrong room)… so I was initially put down as a non-arrival, and was told I was ‘lucky’ he had managed to fit me in.

Feeling very agitated about the whole experience.

Hi sandy, Sorry to hear about the horrible neuro appointment. Just out of interest what area is your neuro based? It sounds much like a neuro I have seen and he specialises in Parkinson’s as well?

Newcastle x

Sandy, that sounds like a horrible experience :(. Please try not to worry about going to the ms clinic though. Hopefully they will be much more understanding of your situation. Hope you have more luck with them

[quote=“Anonymous”] Hi sandy, Sorry to hear about the horrible neuro appointment. Just out of interest what area is your neuro based? It sounds much like a neuro I have seen and he specialises in Parkinson’s as well? [/quote] Where are you based anon as I’ve had a random referral to see a neuro that also specialises in Parkinson’s! Not sure why unless for my spasticity as he also deals in that! Also sandy, really sorry to hear you had a rough time with your neuro! Why don’t you see if you can find one you’ll feel more comfortable with? Xxx

Hello Sandy. Sorry to hear you have had such an horrible meeting with the neurologist. Try not to worry too much about seeing the MS team, I’m pretty sure they will be really good with you. Sandy, there should be a department at the hospital who you can contact either by phone or writing who you can speak to regarding how you have been treated by this neurologist. Its not acceptable that he has behaved this way and needs to be taken to task. Or if you prefer you could speak to your GP about it, who can contact the Neuro on your behalf. You have absolutely nothing to feel embarrassed about…but your neuro should be ashamed of himself…perhaps he should look at early retirement before he upsets and offends to many more people. You know you can find the number for your nearest ms specialist nurse and ring her yourself to talk things over…this may help you. All the best to you, I hope things work out. Lots of love and hugs, Noreen xxx

Hello Sandy.

Hopefully I’m doing this right as it’s my first time posting after lurking for the past couple of months!

I’m really sorry to hear you’ve had such a horrible time. I live in the Newcastle area too and was just diagnosed last week. After seeing your message I just wanted to reassure you that the specialist MS consultant is really lovely (he was really thorough and went through everything properly as well as asking me how I was feeling about things - I was in with him for the best part of an hour!) and the MS nurse I saw was really helpful too so hopefully if your referral is to the same MS team you’ll have a more positive experience.

Hope all goes well and you get sorted soon.

Take care, Karen

Hey Sandy

Big hugs. It’s horrible when a medical professional makes you think your symptoms are all in your head and then when it turns out to be a medical condition still doesn’t help.

I am not diagnosed but my first neuro kept saying all my struff was age related - I’ve just turned 30 years I wouldn’t expect to have bladder / bowel issues quiet yet!

It really made me loose my confidence and even now (and I work for the NHS) I feel very wary when I see somnebody about my symptoms incase they think it’s all in my head. The good news is you’re never going to see that neurologist again and not all neurologists are like that. I’ve seen two neurologists since then 1 general and one MS specialist and both have both great.

Having mental health difficulties is not shameful - in fact he is in breach of equality and diversity if he’s not treating you correctly. You could of course put in a complaint against him - you would be quiet right to do so. But by this stage you may well feel like you want to put the awful experience behind you and concetrate on your health.

Good luck in seeing the MS specialist. I’m sure once things have sunk in you will have lots of questions you’d like to ask and there’s lots of lovely people here to help answer them and support.

Reemz

X

Thanks for the reassurance.

Reemz, it is interesting that you say you work for the NHS but still worry about appointments… I worked in health & social care for quite a while, and also as a teacher with people with learning disabilities, so I am pretty well-versed in equality and diversity stuff… I used to teach about it to my students so they would know their rights and what sort of treatment is and isnt acceptable. I don’t feel his approach was acceptable to me…Whether or not he intended it, I certainly felt negatively judged on the basis of my mental health background, which is upsetting on a personal level, and also quite shocking on a wider societal level.

I actually don’t really mind some discussion of how mental-health & anxiety might cause / magnify physical symptoms and emotional responses. I don’t always think its very easy to completely separate physical and mental health, and so I understand why it needs to be taken into consideration when discussing sensory symptoms. Indeed, if anything, I tend to ‘over monitor’ physical sensations through the lens of mental health. I just think that given the fact that we were looking at a brain scan and discussing the fact that demyleination had definitely occured in enough places for him to say it was mild MS or an MS-like condition, then in that particular moment, it would have been good oppotunity to be more open to my concerns that my sensory symptoms are not soley caused by anxiety. Anxiety more than likely plays a big part, but I really had hoped to be able to start to consider the effect that ms might be having.

Karen, I am so glad you think the newcastle ms consultant is helpful. I think before I go, I am going to ask how long my appointment is… My first neurology appointment was probably about 15 minutes (that was when I was told there was no point discussing MS as 'if you try hard enough you can make any symptoms fit") , and my second appointment (where I was told it was ms) lasted less than 10 minutes. Up to now, I dont really feel I’ve had a chance to properly discuss my symptoms /ask questions & express concerns fully, it is good to hear that the MS specialist might be more helpful in this respect.

I am going to try not to dwell on the fact that it was a negative experience for me. My GP has been supportive, and along the way to this point I have met other doctors (including a particularly kind rheumatologist, I was initially screened for rheumatoid arthritis) - so I know that what happened yesterday will not be my experience every time. Onwards and upwards!

S xxx

Hi Sandy!

Over the last 7 years of my ‘journey’ I’ have practically gone through the whole range of consultants! A general medical initially, then a gynaecologist, a breast surgeon, a haematologist, an orthopaedic spines, an endocrinologist, 2 ophthalmologists, a neurospinal surgeon, and most recently ended up in neurology!

I have to say to a greater & lesser degree they were all caring, had time for me and were relatively thorough - all EXCEPT the first neurologist I saw!

I have to say he was a total and utterly patronising pleb! He was simply rude and dissmissive! First 9 minute appointment consisted of a cursory physical exam (just the foot scrape) and a declaration that my problem was in my cervical spine.

The second was less than 9 minutes where he sat looking at the wall, legs crossed, hands behind his back repeating ‘I have no idea’ to my questions - he didn’t have my notes or any of my scans with him!

Worst of all this came at a really really bad point for me - I had that week been made redundant from my precious job because of my chronic ill health - I was totally daunted with it all and feeling that my whole world was falling down around me! I had been so keen to see him too as I felt I was at last getting some answers!! He said he was referring me to an MS Specialist but the letter sat on his desk for 3 months!!!

My GP and the MS doc’s secretary were absolutely horrified and encouraged me to complain - but by then I did’nt see the point in all the stress and resolved to put it behind me - luckily the most recent neurologist was great!

Anyway - that’s my very negative neurologist experience - and having been on this forum for the last year & a half - unfortunately we are very much far from being the only ones!!! It makes me sad that people in such desperate situations seeking help are repeatedlytreated like that!

On the anxiety subject I also know how powerful the mind can be and becuase it has been so hard to find a physical cause for my symptoms I have consistently asked all the docs I’ve seen if there was any possibility that any of it could be attributed to a stressful job etc - and every single one of them has said absolutely not! So where the heck did he feel he could say that to you at such an early stage???

You come accross as a very positive person Sandy - sometimes it’s hard to stay that way when all this is going on - but you make sure you do like you say & put that negative experience behind you xxx I’m sure it’ll be a one off and you’ll now get the appropriate care & support you need xxxjenxxx

Hi Sandy! Your experience with this neuro was disgusting! I couldn’t believe what i was reading! It sounds to me that he is 'a bit put out ’ to be proved wrong by the results of your mri scan. He sounds completely out of his depth here and it makes me so cross that he has played on your mental-health issues…Grrrrrr! I am not in your area but i think when you go to see the ms specialist team you should find you get the help you really deserve. Anxiety is a common symptom of someone with ms so your mental health issues could all be related to having ms and not a seperate issue? I was diagnosed with ms 8 years ago now. I have anxiety sometimes and find my gp puts everything down to my anxiety - its really annoying!!! I have never heard of a neuro being able to diagnose ‘mild ms’ by looking at an mri scan before!!! (he doesn’t know what lesions you have on your spine!) I was diagnosed 8 years ago but i believe from past symptoms i have had ms for at least 14 years. When i saw the ms specialist team they put me on the right track - i was put on the dmd rebif and was sent for neuro-physio to help with some balance/vertigo issues i was having. I really hope you have a more positive experience with the ‘specialists in ms’ because to be honest it could not really be much worse than you have experienced so far! ((hugs)) Teresa.x

Hi Sandy I had a terrible first experience at a Newcastle hospital too…I asked to be rereferred to an MS specialist who I now see…he is absolutely fantastic. Pm me if you need more info…you can specifically request a consultant. Catherine Xx

Hi Sandy

Please please don’t let your experience with this horrible man make you feel bad. He obviously knows nothing about MS or mental health issues (which you should not be ashamed of). I’m pretty confident that your experience with the MS team with be totally different. I think there are quite a lot of people on here (including me) who had had dealings with the odd neuro who thinks the sun shines out of his bum but doesn’t really know his ar$e from him elbow and then when they get to speak to the people who actually specialise in MS (MS nurse or MS neuro), find it’s a whole different experience as they understand not only the condition but how you may be feeling about it.

With regard to the length of your appointment, I have always found that they are as long as you need them to be. Yes they may allocate 15 mins to it but if you have a lot to talk about, you don’t get cut off 1/2 way though. My advice to you would be to make a list of all of your questions and take it with you. Make sure you go through all of your questions, I often pass my list to the neuro as I often get a bit side-tracked or muddled.

As your GP is supportive, make sure you go and let them know about this appointment, they may be able to hurry the referral to the MS team for you and I think it’s always good to keep them up to date with things.

Sue

x

I feel for you Sandy, mine is like that too. He dismissed me as being stressed initially but recalled me himself following some test results. I saw him on Wednesday and although he was a little more freindly this time and more willing to investigate things further he still had quite a bad attitude. He had the nerve to ask my “why are you so keen to put a label on on your symptoms anyway?” Erm… hellooooo…it’s not a flipin label i want it’s a diagnosis. How else am i going to be able to deal with the symptoms if I don’t know whats wrong with me? Grrrrrrrr… he really needs a lesson in compassion and understanding. Some of the awful stories I see on here about horrible neuros really makes me mad. They should walk a day in our shoes, then maybe they would show a bit more understanding and care.

Hi Sandy,

Teresa has put her finger on one vital point. I read your post through and then went on down.
I would be very worried by a neurologist who could diagnose OCD and mild depression. To formally Dx either of thse (let alone both) would take either a Psychiatrist or a Clinical Psychologist.
You may have had such a formal Dx, but unless you mentioned this to him, he had no place to say it.
If you have figured out either of these for yourself, well and good, but please do not bring this up when you see the MS team unless they bring it up.

Just keep in mind that it is quite OK to be worried about your symptoms. Being worried is not the same as being depressed.
Mind you, you could say that you felt that you were being given the runaround because this neuro was not able to Dx you - and that might just be something that could trigger depression. I would have thought that some sensory problems would immediately suggest MS or another neurological condition. I hate to think how he treats his Parkinsons patients.

I guess that you can see that we are all on your side - so do tell us what happens when you see someone who does know something about MS.

Geoff

Hi sandy I feel for you toi as I have stuff put down to anxiety because I had PND after my kids were born and then 18mths ago went through a really stressful time with my poor daughter at school so the fact I’m on anti depressants comes up on med list from Gp. Luckily neuro I’m seeing Monday thinks anxiety is a lazy diagnosis in neurology so I’m sure your ms team will be lovely too

There seems to be a common thread running through here. I can completely sympathise with you, it’s disgusting how u have been treated and a few others on. Mine too is a dismissive pleb, he claimed on my first appointment that I had no neurological deficit, so I questioned as to how he came to that conclusion when the only places he pricked me were my hands and feet and I had said I couldn’t feel him prick my feet! His half hearted excuse of an examination led to him saying despite brisk reflexes it could not possibly be ms. I questioned him about a list of other symtoms and there are about thirty in total. But again he brushed them off and said he would review me in three months. His letter to my gp claimed that my symptoms were suggestive of ms but the protest results did not support it. Had he said that to me I would not have come out crying at his disgusting dismissive attitude. Having these symtoms is depressing enough for you, without having to be subjected to such disgusting treatment. I think we should start acting on such shoddy treatment and complain. I know I am going to, and I have asked for a second opinion. Good luck, and I hope you get some kind of reassurance from the ms team, I am sure you will get the treatment you need and deserve. He is a one off in that setting, unfortunately from the threads in here, not a one off nationally. X