Hi all, I’m a 49 year old male, today was my first appointment with neurologist which was via phone call since on waiting list last November, which didn’t go so well. Let me give you some history, July last year I lost the use of my left leg as if it wasn’t connected to my body, prior to this i was experiencing white phosphorus vision for about 3 weeks. I went to A & E and they said it was a TIA, following that i was experiencing vertigo and blurred vision, stroke unit said its progressive so not a TIA and transferred me to neuro, between July and present i have atrophy in my left leg and arm, fasciculations across my body and head, slurred speech, difficulty speaking, i have now developed difficulty with handwriting and foot drop. There is plenty more but i could be hear all day. So back to my appointment this morning, it started off with “hello i hear you have problems with pins and needles”, i replied that was a long time ago and i have a long list of issues would you like me to go through them? "no its ok lets talk about your sleep apnea (this is something i have not suffered with for many years), Other than that all the doctor wanted to do was send me to a sleep clinic, oh and counselling for my ADHD which i didn’t ask for nor mention as that is not an issue either. I asked what can i do about my mobility? which the doctor on the end of the phone said “oh your fine just do exercise”!!. I am utterly shocked and feel so dismissed.
Sorry to hear about your difficulties.
Ask for a second opinion. If you don’t get satisfaction, consider a complaint via the PALS service in your NHS trust. Linked to the Chief Exec’s office, every trust has a PALS (Patient Advice and Liaison Service).
You’re here on a MS Forum - has anyone suggested MS to you or is this your theory?
That’s awful! How bloody frustrating for you, I’m sorry they’re pushing you through all that rubbish.
It doesn’t sound like you were talking to a neurologist at all, so I’d definitely speak to your GP about the referral and get them to read the riot act at someone. Unless of course it’s them that made the error and they can eat a bit of humble pie. If you’re not getting anywhere then use the local health board’s complaint process, I think they are independent of the health board and can kick ass. Maybe have a chat with your local MS Society group as well, they might be able to give you the name one of the consultants that specialises in ms in your area and you can ask your GP to aim the referral at them. Good luck
That sounds very unsatisfactory - I am sorry that you had such a poor experience. One option is for you to write to the person you spoke to, copied to your GP, setting down the things he couldn’t use bothered listening to and asking for a proper sit-down consultation rather than a phone chat with a distracted person. Even in this world, a letter can carry some weight and at least there’s a paper trail and something on the record the you can keep referring back to.
Thankfully I saw my GP today and we discussed this, the GP could clearly see my condition and was concerned with the fact that the neurologist didn’t conduct a face to face fact finding consultation. The GP has written to neurology with a complete list of symptoms and requested urgent appointment. I just hope it will be a different consultant next time.
That is excellent news. A good GP is a blessing.