First time writing.

[Aberheart]

Hello, I have an appointment due next week for EMG and Nerve Conduction Studies after my GP referred me to Neurophysiology. She put on my medical record "could this be FND?"She never actually mentioned it to me , just stated she was referring me for neurological and nerve tests, but she mentioned FND in my notes.

My symptoms are mainly to do with my walking. At times I feel like I'm walking on sponge or my foot has slipped. I'm now having to walk with a stick for fear of slipping or losing my footing somehow. I can walk quite well if I hold on to someone's arm but that's not always possible so I feel quite vulnerable when I'm out alone. My feet sometimes feel like the soles have been hit with a hammer. They feel bruised, throbbing and burning for a time, then it passes.

I also have shaking and jolty tremours in my legs and hands when I'm anxious.

I'm nervous about what to expect with the tests and if any one can offer advice . Should I ask any specific questions or further tests at this point?

I have had an MRI of the head which came up clear apart from brain early small vessel disease which they said was irrelevant and just an age issue. I'm 58. I also had MRI of my lower back because of severe pain but that came up all clear also.

Any ideas or advice would be so appreciated. Thank you

[smilesontherun]

Doctors write all sorts of things on reports. I was in the emergency room recently and the ER doctor wrote "functional neurologic disorder" in my notes. Actually, my neurologist at the time never mentioned that to me. I was understandably mad. I think in this situation, I would go into it with an open mind. If it's in your notes, it doesn't mean you "do" have it. They're probably looking at possible options as to what it might be. Try not to worry about it.

[Lady4]

My son hasn't been offered any scans but has had an array of systems, some of what you mentioned, ie leg spasms and gait problems.

The GP can't diagnose FND, the Paed put that in my sons notes (not to me) and my son was disgnosed following a round about way (with a lot of invention from me).

The Neurologist is the one that can diagnose and they must state their rationale using the "rule in" dx but they are the Specialists so should know.

Your lucky they are being so thorough and hopefully you will get some answers and multidisciplinary support (P/T and O/T included).

Hopefully some others can give you an idea of questions to ask (check out the Hope forum too) plus you can always put EMG and FND in top search bar and research old content, the same with Nerve Stimulation.

Good luck and just breathe

[210272]

Hi Aberheart,

Diagnoses should *not* be told to patients via their notes, they should be given face to face during the consultation. So I would ask your GP why she didn't follow protocol and why she suspects FND. FND diagnosis can be made partly as a result of the content of referral notes (although I can't remember the percentage) so if your GP has got it wrong, that won't help you. For a FND dx they need to demonstrate the 'rule in' signs and not make the dx on the basis of negative test results alone. Your symptoms sound similar to a lot of people with balance conditions so I would also ask for a referral to a reputable balance centre for a full assessment via a team including audiologists, ENTs and neuro-otologists.

[Aberheart in reply to 210272]

Thank you

[HappyGardener6]

Hello! I'm so sorry that you have been going through all this. You do sound so similar to me. If you have not been referred to a neurologist, make sure to ask for a referral. Go prepared, if possible with a list of symptoms and time line and questions. Ask the neurologist to take a copy to put in your notes, too. It also helps to take someone with you, who can step in if you get brain fog or lose track of what you are saying. Wishing you the best of luck!

[Aberheart in reply to HappyGardener6]

Thanks so much for your encouraging reply ❤️