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feel like crying!

Got my copy of the letter to my GP today regarding my MRI results. It says my head and c-spine are all normal as are the blood tests. I have been discharged by the consultant and basically have to get on with it! Still no sign of the full spine MRI she originally said would be done because of the problems with my legs! So I guess that means I am now classed as having FND. The consultant made me feel like a fraud in the appointment and now it feels like she has just brushed me off. I will definitely be questioning my GP when I get to see her. :frowning:

So sorry to hear that Sharon. Can you not ask to see a different consultant? I’m not diagnosed yet but last year had to see a gastro consultant and when asking about my medical history I told her I had seen a Neuro and who it was but was discharged, she looked straight at me and said you could always ask to see someone else for a second opinion! I’m now back under the neuros waiting MRI in 3 weeks, unfortunately seeing same one as last time. I’m going to wait and see what results say, but wasn’t impressed with his attitude and he made me feel like a fraud and hypocondriac, I will ask to change if he’s like that next time. Good luck and hugs, Jane x

Hi to both Cassies mum and Sharon.

I was in limbo for eons and kind of still am!

I began with walking problems in 1998…age 45 and I`m 61 now.

I was suspected of having PPMS, but all my 4 MRIs, 2 LPs, 2 EMGs and a VEP, plus gallons of blood tests all came back normal.

But my mobility worsened quite rapidly. In fact I have been a full time wheelie person for over 9 years and this year I lost my standing strength and have to be hoisted for all transfers. I also need help with all my personal care. My hubby is my main carer and Direct Payments pay for 3 other carers.

I`ve seen 16 neuros and they have now labelled me with;

progressive spastic paraparesis…possibly hereditary.

But I have never been made to feel its all in my head`, nor have I been discharged. I see a neuro every year.

If you are still having neurological type problems, then I fail to see why neuros discharged folk like that. Something is definitely wrong and it needs to be monitored and investigated.

If youd like to know anymore, please ask. If my experience can help anyone, im only too pleased to try to help.

luv Pollx

Hi,

I completely understand where you are coming from, I have just started again after having the same experience with the neuro. I swapped hospitals so I wouldn’t get that arrogant person again (wow i was well behaved then lol).

Keep your chin up and go for a second opinion, I wish I had years ago

Joanne xxx

Hi,

I completely understand where you are coming from, I have just started again after having the same experience with the neuro. I swapped hospitals so I wouldn’t get that arrogant person again (wow i was well behaved then lol).

Keep your chin up and go for a second opinion, I wish I had years ago

Joanne xxx

Thanks all, I am going to keep pushing. The consultant told me straight out at my appt that she could categoricallly say there was nothing serious going on, that it would be FND and that if nothing was found on the MRI then she had no reason to see me again, so I haven’t even got a follow up appt to go to. On my letter it states that I am now to contact my GP for any further problems!!

Poll I know you are a fountain of knowledge and a real treasure on here. Thanks. At the moment I’m doing ok and the episode I was having has basically passed. It has left a few problems and I do worry that with each episode I’m going to be left with worse after effects each time. I knew it would probably be a long road and was prepared for that. just wasn’t prepared for such a quick dismissal! I will have to see what my GP says. At least she is really good :slight_smile:

Sharon x

Hi Sharon it seems there are a few with the same experience on here. My gp has referred me back straight away which will take about 7 months down here. I’m sure the neuro will be negative from the start. But I’m going to go against my nature and stick up for my self! Ask questions and explanations. One thing I’ve done in the mean time is do a self referral to physio unit. I know I have signs of demyelination even neuro agreed with this before he discharged me after a clear mri which he did without being seen. My gp reckons they could have more clout from physio or evidence to demand neuro sees you again than the gp it’s worth a try and they could help in other ways too. All the best for future investigation Jo x

Awful isn’t it you have my sympathy I just had a gead and neck one done 4yrs ago but mainly because of migraine as the neuro had already told me none of my symptoms were abnormal and did no neuro exam mri was normal so discharged.

Hi Sharon, awful for you and many of us here copletelt understand and feel your pain. So many awful, dismissive neuro consultants out there, it’s about time these people were made accountable for the ditress they cause. Don’t give up, i have now been to various consultants and finally got a dx, although not for MS it’s something equally debilitating and my neuro has all this time been saying i’m just stressed, but other tests speak for themselves and he can’t say that anymore, hah, egg on his face or what!!! So keep going hun, whether ir’s MS or something else, you will get there and get an answer. We are all here to help yiu with your journeyxxx

I also have had a similar experience :frowning:

I wish the NHS could implement a system whereby patients could find out other patients experiences of a particular doctor.

One thing I have learned over the last few years is that there are not as many neurologists around as one might expect (probably the main reason we have to wait so long for appointments I guess). That being the case, I do sometimes think it would be particularly useful / pertinent if there was a national register where patients could leave open feedback - it would be interesting to see / track whether specific individual neurologists have a reputation for treating patients in this manner, . I suspect (and hope!) that it is maybe just a few ‘bad apples’ who behave in such a way (I guess you find idiots in any profession!) - but because patients have no way of finding out this information, it seems that such consultants are not being held as accountable for their behaviour as they should be. I understand that there are difficulties with such systems (ie patients with unfounded complaints etc) but I honestly think there needs to be much greater transparency on the part of the NHS with regards to patient feedback. Also, for those neurologists who do treat patients with due care and respect - such a system would surely lead to more recognition of their positive approach. I don’t think its enough for a patient to have to rely totally on the ratings that are given to a hospital department as a whole (the neurology dpt I go to is a ‘national centre of excellance’ - but the specific consultant I saw actually caused me a lot of distress). Patient experience is very very dependent on the specific consultants we see, and I wish there was a better way of openly tracking these experiences

I am so sorry you have been made to feel this way. It is unpleasant enough to be experiencing distressing symptoms; it is doubly unpleasant to not know the cause; and the situation is made much harder than it need be if the professionals who are meant to be ‘helping’ us actually end up causing additional distress.

Hi Sharon Im sorry to hear you have been made to feel this way. I can appreciate what you are going through, as been there myself. We know there is something wrong with us and to be made to feel like we are making it all up just makes matters worse for us, symptoms flair up with stress. I got a 2nd opinion with the help of my GP, refered outwith my local health board. Find a good MS specialist, do your research and ask you GP to be refered to them. I asked about and googled the MS specialists that are listed on the MS Society page and picked one who name was published in lots of studies/journals.
One MS specialist made me feel like I was wasting his time and definitely told me I did not have MS , but did not discharge me, but wanted me to continue to be seen by general neurology. General neurology said I had MS! Second opinion unfortunately, said I do have MS, but fortunate to start DMDs sooner rather than later. I know Im in good hands and glad I sought second opinion. Good luck and dont give up someone out there will be able to find out what the problem is.