I just got an appointment with profes... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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I just got an appointment with professor Mark Edwards

angelina22
angelina22

For June 11th. Feeling so grateful right now, but I won’t be depending on him or this appointment - it just feels so good to get a second opinion and possibly some advice beyond what I’ve received so far (which is a whole load of nothing.)

Has anybody else here seen him? Is there anything I should keep in mind when going into this appointment? I’m scared I won’t make the most of it as I feel that this is my last chance when it comes to seeing medical professionals. I can guarantee my doctor won’t want me to push to see anybody else after this.

7 Replies
oldestnewest

Hi,

Yes I'm under the Prof. He's lovely and very knowledgeable so don't worry. He's kind, understanding and thorough. Kind of reminds me of Penfold from danger mouse.

If you have poor concentration maybe jot down you previous medical history, anything significant and any medication you are on as sometimes this is taken by a more junior member of the team before you see him. If you have a blue badge at St Georges you can take it and show it to the receptionist on your way out for free parking. Typical NHS car park, always busy and not enough disabled spots.

Good luck and don't worry. If you qualify for physio then they are lovely too. xx

angelina22
angelina22 in reply to thinkin

Thank you so much for your response. I received another letter in the post today saying I’m seeing a different neurologist, not Mark Edwards.. but the whole point of being referred to St George’s was to see Mark Edwards. Not sure what to do now. I’m hoping when I go to the appointment that they’ll be able to accommodate my need to speak with him. My doctor wanted me to see him too. Really appreciate your reply, you’ve further confirmed for me how necessary it is for me to get a second opinion from him. Thanks again.

thinkin
thinkin in reply to angelina22

Hi,

Just check it's not Dr Wren. He's a total abusive arse. He made me struggle to undress right dow to my bra and knickers, didn't allow me the dignity of a privacy cover and then did the briefest of neurological exam that he could have done with my clothes on. I felt totally invaded. He just said there was nothing wrong with me. He even hinted that I had somehow faked the asthma attacks that triggered the FND.

I looked over to the screen with my blood tests on it and saw all the red. I noticed when he moved away that my vitamin D was low and he was so dismissive, even though finding out later that the lab had recommended that I have a 3 month course. It was only during the tribunal for my PIP that I was given a copy of my GP notes and the arsehole had also ignored the fact that my B12 was in my boots too.

Hopefully it will be one of Prof Edward's team. There are some researchers working with him so hopefully it's one of them. Ring the hospital to check. Just because they are the same hospital it does not guarantee they are all of the same opinion when it comes to FND.

Sorry if this worries you, but you really need to check it's one of the Prof's team.

Good luck. xx

angelina22
angelina22 in reply to thinkin

Thank you for your reply and I’m so sorry it’s taken me this long to get back to you! I don’t have the letter with me, but from what I remember it says I’ll either see Mahinda or one of their team. If it’s Dr Wren, I won’t allow him to belittle me. I’ve had enough of shitty medical professionals and simply won’t take the disrespect.

I’ve been thinking about even cancelling the appointment as I feel I’m progressing by myself and am concerned they’ll just throw a load of bollocks at me that I don’t need. But at the same time, I also think it will be an interesting opportunity, just to see what they say. I had really thought I’d see Dr Edwards, but I guess not. I will update once I’ve had the appointment in June (assuming I definitely go through with it - I think I will) and hopefully it will have been a positive experience. I’m so sorry that you’ve been let down like this, but thank you for sharing this experience with me. I have no room left for worry - only hope. Much love.

Hi, yes I saw Professor Edwards 17 months into my undiagnosed journey of hell, it was a lifesaver to finally find out what was wrong with me. He referred me to 1 months rehabilitation inpatient program in London for FND symptoms. I had to wait over another year for that as waiting list was long. The inpatient program was brilliant, techniques taught to each individual person for their percific symptoms. For me seeing Professor Edwards changed my life of no answers, no help, just left living in pain, unable to walk properly, slurred speech etc. Now 4 years into FND I still struggle with constant fatigue but I see my friend now and my daughter which I was unable to do before rehabilitation, l have techniques to help my symptoms but fatigue mental and physical is very hard to manage and I usually overdo it, I always forget when walking that I have to walk back as well but I’ll keep on fighting hoping one year will improve and will give me back some of the life I had before.

angelina22
angelina22 in reply to Leesaloo

Amazing, I’m so happy to hear that you’ve made so much progress. It sounds to me like Mark Edwards has brought a lot of comfort to many people who are suffering. I don’t currently feel that my symptoms are as bad as many people with FND (I don’t have any issues walking, any issues with balance, slurred speech, or cognitive issues - I feel my symptoms are different to most here) so would love a second opinion from him. Thank you so much for your response and I hope you continue to push onwards and upwards. You should be so proud of yourself, you’ve come so far.

Leesaloo
Leesaloo in reply to angelina22

Thank you for your lovely reply, I too wish you all the best on your journey.

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