I just need a good vent. Well I had my neurology appointment tonight and it was absolutely a waste of time I got there and sat down n he had no idea why I was even there my gp had put the referral through as asked by the neurologist I saw privately who had given them his notes on my first appointment . They sent no details through so it was like going from scratch(luckily I took the letter going through the examination with me even though he literally glanced at the 3 page letter which was suspected demyelination) . I told him 5 weeks ago I had a brain and full spine MRI and straight away he snapped that he doesn’t have any access to my medical records until I told him I had the scans done at the hospital I was attending for this appointment. A couple of clicks later my scans were up on the scream and he said My MRI results aren’t back and can apparently take up to 5 months!! I have never seen anyone click through pictures so fast and said well they look normal to me but there is no full report back on them so as far as he was concerned I don’t have ms then said I’m no good at looking at spine mri’s so will have to wait for the reports. Even if any matter was seen he flicked through that quick it would of been impossible to notice them. He then In a manor did a quick physical and said to have some bloods done n he wants to do some tests on my nerves so just wait and see. When it comes to my symptoms he doesn’t seem that interested and said it’s most probably going to be something I’m not going to get an answer to. I feel non the wiser at all. I felt on the brink of depression as it was with all these things that seem wrong with me I now feel worse because of tonight’s appointment . Xx
That’s awful! He has no appreciation of just how terrifying it is to have a potentially life changing condition and he lacks any compassion. I would make a complaint through PALS
Rachel29,
I am sorry to hear that you are getting such poor support from your “professional” team. It is no wonder you are feeling let down.
I wonder how the neurologist would like to be treated. I understand that it takes time and skill to interpret scans but 5 months is not even “joke” worthy. I bet that if a wad of cash was involved it might be a bit swifter. If however the delay is due to overwork or shortages of skilled staff, I think you should make a fuss with your MP and the press. (This might have a similar impact as a wad of cash)
we should not need to fight at what is already a stressful and difficult time.
I hope that you get better support soon.
Mick
Hi Rachel
That sounds like a horrendous appointment. What an ar*e.
As Minstrel says, you could make a complaint about the neurologist via PALS. That is the Patient Advice and Liaison Service. If you look at your hospital website you should be able to find the contact details.
Did you have anyone with you to back up your experience? No matter if you didn’t. They should accept your explanation of the appointment regardless.
But the problem you now have is where you go from here with your health! I assume this useless doctor isn’t an MS specialist? Is there one at your hospital? Or within your local CCG (Clinical Commissioning Group, which replaced the old PCTs)? Maybe PALS can help you to get another appointment with a specialist, perhaps one who has looked at your MRI scan and previous notes before you see him or her? Or maybe you should see your GP and ask for their help in getting you in front of a specialist neurologist?
I do hope you can get some help with how you move forward from this dispiriting experience.
Sue
Hi Rachel29, I can so sympathise with you. I had my appointment with neurologist last week. Had one last year private and then transferred back to public. It is actually the same neurologist, but when I went back to her public the first time about 2 months after my private appointment, she just asked me what she had recommend at the first apt, I said MRIs, so she ordered brain and cervical, thank you & goodbye. ever asked about symptoms, if worst, better. My Mri turned out to be normal, I don’t have the report, that’s just what the letter said, and I was apparently discharged automatically. My GP was astounded and had to refer me again as I got bad again a few months later and that appointment was finally last week. The first thing she said was that she might never have an answer for what is wrong with me. I mean, after just one mri, no other tests, it is a very defeatist attitude no? Thankfully she is sending me through other tests including a load of bloods and a nerve conduction study.
A year and a half ago, I sometimes thought I was going mad with the symptoms, but now I know there is something wrong and there is nothing worse than having to fight through the health system to convince someone to look further…
Best of luck, try and keep positive despite it all x
Hi ladies
We must all be seeing the same Neurologist!, I had a neck op 6 mths previous and then 6 wks after my op it all went downhill from there, the Neuro surgeon discharged me saying the op was a success and all my problems were just age related!, I am 45. My Gp referred me as he was convinced with my previous history he was looking at MS, I have just had my 3rd appt after a 4mth sit and wait, 1st appt I was told that everything would become clear in the scan he did a full neuro exam with his colleague and they both kept commenting on it, 2nd appointment was after an MRI without contrast, the quality was appalling as I got a copy, he told me it was clear and yes he was convinced I had MS, but as it was clear it wasn’t, he said he didn’t want to diagnose me with a nothing diagnosis ( ME) as he didn’t feel that was what it was and I wouldn’t get the help I need, apparently this diagnosis is when they can’t find out what is wrong with you ( in his words), we may have to wait to see how everything goes, he sent me for bloods and a nerve conduction test ( I had one after my op and it showed ulnar nerve damage) same as before, I knew that anyway because I was offered carpal tunnel ops for both hands straight after my neck op ( I refused as I can probably cope with this level of pain for now). I have been left on Lyrica with topping up of paracetamol/ ibuprofen every 2 hrs, now I struggle driving any more than 10 mins ( loss of concentration), my legs give way, I sound like I have been hitting the wine ( I have quite a selection building up so I assure you I haven’t), my brain is just not processing information, I hit a wall at some point during the day which requires a lie down, I have delevoped Tinnitus and my eyes have deteroriated in 3 mths ( optician states if it happens again I have to an eye specialist) he thinks it is the muscle not reacting he was concerned due to the speed it has happened.
So this was my 3rd appt as soon as I went in I got the feeling he wanted to rush ( considering the board said he was 20 mins behind time and I was called in 10 mins early!!!)
He asked how I was I explained that I was not good and he just wrote tinnitus and eyes down, I don’t think he wrote anything else down apart from a prescription to up my meds ie: now put me on Lyrica and Duloxetine in the morning!, as I explained I still work, he stated that if I deteriorate again he thinks I should stop work!!!, do I also stop looking after my 3 children because that is my 2nd job !!!, if I had let him he would sent me on my way, I asked about further tests to rule out anything else, forget about MS and any other tests he isn’t doing any!!! I have ME, considering he told me it was a last resort and he didn’t believe in that as a diagnosis I knew then he was getting rid of me, I pushed him for help to manage this reluctantly he said he could refer me to an ME clinic if I wanted!!!, and only after I said it was getting me down he said he would refer me to a neuro psychologist.
Sorry about going on but I understand where you are coming from and your need to vent , if I just went on my merry way I would be lay on the sofa, popped up on pills and not working… I don’t want to do that, I want to explore every avenue possible 1st, so I am seeking a 2nd opinion, I have done loads of research and I don’t think it is ME ( I know someone who has it and although many of the symptoms are alike I have lots more that are not), I am not saying it is MS either but at this moment this matches it more, it may something completely different but I would like it explored more and not just wriiten off !!! I felt it was a complete fob off and a quick win ? for him, he also couldn’t explain why it took 4mths to see him when I should have seen after 2!!! the admin had it on record I had seen a consultant bang on 2mths!!! he said they had made a mistake, I think it was a meeting target work around myself!!! so yes your frustration and anger is understandable and by the look of it you are not alone, keep going ask for a 2nd opinion ( maybe out of area) , I am paying privately just for one appt just to see if I am on the right track for a 2nd opinion.
I wish you well on your battle for answers, because looking at this forum it is a battle!.
My appointments are always a rush and they MS clinic always is full to capacity - oh i wish for more time with my neurologist.
Just an update as I’ve now received the letter from the neurologist I saw and put it this way I’m more pissed off then I was before. Starts off, reason for referral paraesthesia. Diagnosis non specific paraesthesia- no evidence of demyelination. General back pain. Action required none. I’ve been referred from a private neurologist I’ve seen for suspected demyelination that’s why scans were ordered! Then goes on to say as I’ve previously seen the other neurologist it would of been more appropriate to see him. He then mentions all the NEW symptoms I have told him about but then says I’ve either improved or become more tolerant to them( bearing in mind I have had this problem 24 hrs a day since 12th may I assume I’ve kinda got use to it)
This is the good part, she saw dr Murphy who felt that the investigation for demyelination was required and organised mr’s of the brain and spine. These scans have not yet been reported( 1st sept I had these scans but let’s just remember for a minute what he’s just said they haven’t been reported) specifically there is no evidence of demyelination. Says my exams were normal which took him 30 seconds ish to do ha. I reviewed the mr scans which to my eye appeared Normal specifically there is no evidence of demyelination.
There is no evidence of a concerning neurological problem here. The clinical features would not be suggestive of demyelination and the normal mr scans would effectively conclude that possibility. Often we cannot identify nonspecific paraesthesia in the absence of a neurological deficit. It would be reasonable to organise some nerve conduction and I have checked some bloods that’s were taken( I still haven’t had any answers from that as he was checking vit levels) I have explained there is no suggestion of a concerning neurological problem and we may have no explanation for these symptoms. We do not find any medication is helpful for these symptoms. If there is no correctable cause then no specific action is required here. I will write with the test results but no further action is required on my part. Discharged from clinic.
Can anyone else see why I’m annoyed. How can he say all this when the scan results are not even back yet?? As it has suddenly started my original neurologist said it could be my “first episode” and did a proper examination. This guy didn’t. Fuming. Got my nerve tests on the 28th Nov!! X
This just keeps getting better. I got out of work yest to missed call from the hospital so I phoned back. They have made me an appointment with the original consultant I saw on the 1st Dec. Apparently my doctors have put the referral through. I rang to speak to the secretary of the 2nd neurologist I saw to see if my bloods were back and she said yes but u will have to wait till the nerve tests are back for the results together. I don’t see why because if I do have a calcium deficiency why do I have to wait over another to be told! She then praised the 2nd doc I saw saying if he saw the mr scan and says it’s fine then it is! But I kept saying to her the report wasn’t back and there could be something small on it etc but she was having non of it and said let’s just see when the results are back and will see this doctor is right. Then as I still continued to express my concerns that he’s basically giving me an all clear result with no test results back her reply was well when everything is back you can always go back to your doctors and asked to be referred to someone else. I give up on him and that secretary. I have no idea why the docs have put the referral through for the original guy but I’m glad. I will get a property examination etc as this guy is the one who has suspected this is a first episode. Not liking being in limbo with results etc as we are on week 7 now but glad I’m seeing a good doc soon.