Neurology appointment - what to expect?

[RainbowBrie]

My neurology appointment at the hospital was originally for December. It then got brought forward to September after my GP did some begging for me. Then covid happened and it got moved forwards till the end of July (!) I guess they are seeing more people now it's telephone or Skype.

I had a phonecall today and the consultant has asked if I can do an appointment next week now. So I now have an appointment on Thursday. I feel unprepared.

Any tips of what to expect and what questions they may ask or that I should ask? It's Skype as I said I find phonecalls tiring.

Thanks in advance

Brie

[AndrewT]

Dear Brie,

'What Sort Of Questions Should I Ask'... A difficult one, to answer, basically because I don't know much about you. My advice would be 'Different' if you had had say a Road Traffic Accident (RTA) or other Concussive Injury- to say a Bleed On the Brain. If your Damage was caused by a Disease, I have Vasculitis myself, or indeed by some 'Other' reason.

So, to be honest, apart from some 'General' questions... . 'How Severe is My Injury', 'Whats The Prognosis Doc' and the like I can't really advise you further.

Equally I Don't know the 'Type', of Injury, either.... let me explain- Frontal Lobe damage presents VERY differently to say Cerebellum Injuries. Everything, from Emotion/ Maturity, through comprehention/ Reasoning to even basic 'Literacy' Skills- CAN be, the direct result of Damage, to different area of the Brain.

One girl, who attended 'my' Headway- a Brain Injury Charity- had even lost the Ability to 'Tell the Time'. Another man 'walked with a frame', similar to those with damaged/ broken legs. Another, dear man- who lives quite near me- has, slightly 'garbled' Speach....As a result of FOUR Strokes (you don't survive more than Three, like Ever).

So, you see, Brie WITHOUT, trying to be 'funny' with you, this IS a difficult question to answer- especially as it will be a Video Link.

My best advice, as far as I can Give it, is to ask 'What You Want To Ask', pretty much nothing is Off The Table, if it something that YOU want/ need to ask. Sorry if this hasn't been, of much help Brie.

Have you contacted, your Local branch of Headway? It Is a 'National' organisation, with a presence in evey County. Maybe look on Line.... Normally i would suggest the local Library, 'normally' that is....

Lastly, can I Send you my- indeed ALL- our 'very best wishes' Brie. Our thoughts, and Prayers, are with you. Please don't hesitate to contact us again, whenever you need to.

AndrewT

[RainbowBrie in reply to AndrewT]

Thanks Andrew. My story is in my bio. I had encephalitis 7 months ago. I have mainly got the extreme lethargy, bit of forgetfulness, tinnitus, effected my peripheral vision in my right eye and have just been diagnosed with PTSD by my counselor.

I have my list of symptoms to tell him. Just really anxious, I find medical appointments awkward.

Thanks for you reply and best wishes.

[NotShreksF in reply to RainbowBrie]

Hi,

I also had Encephalitis. It started in May 2019. My first neurological appointment was awful! He told me I was addicted to pain killers and needed to stop them. My GP is amazing and referred me to a specialist neurologist. I had my first appointment last week and it was a breath of fresh air! He understood exactly what the condition leads too and has initiated several layers of support. My advice is if you’re not happy with this appointment seek a second opinion! Good luck x

[RainbowBrie in reply to AndrewT]

Oh and headway groups are tricky where I am. I'm rural Dorset. Both groups near me one Dorset but far east and over an hour drive away and the other in Somerset and also an hour drive away. Currently can manage 30 mins each way in a car. Before getting tired and needing sleep. I rarely drive now.

[cat3]

Hi Brie. I think you'll find your appointment will be relaxed and friendly.....nothing to feel stressed about.

Take your list along with you and ask any questions openly and freely. The neurologist's first job is to assess how you've progressed and how you're coping ; then to determine whether there are any issues needing to be addressed.

My experience of that particular branch of specialists gives me only good feelings ! 🤗 You'll be fine I promise, and I'll be interested to hear your take on it after the event. 🤔 Cat x

[RainbowBrie in reply to cat3]

Neurology appt went well and he was lovely. Explained it all very clearly. Brain appears to be hyper vigilant so we need to work at calming it a bit. I start amitriptyline today and a migraine treatment to come off of the ibuprofen. I got to see my brain scan which was upsetting but also reassuring at the same time. There's no indication for long term damage. Brain just needs to reset itself. He's asked my GP to sign me off of work and thinks that was too much too soon. So effectively I am back at the beginning but with alot more knowledge, experience and hopefully the world around me being less chaotic.

Thanks for all your support.

Brie

[cat3 in reply to RainbowBrie]

Thanks for the update Brie. I'm so glad your neurologist put you at ease today and that you've come away with some new and hopefully beneficial treatments.

I benefitted from Amitriptyline for many years in my 20s & 30s with no side-effects apart from dry mouth and constipation so I hope they work for you, although they usually take a couple of weeks to assimilate. And the migraine meds should be an improvement on the Ibuprofen ; I hope so m'dear.

My surgeon showed me my scan at my first check up appt. and, like you, I found it weird seeing inside my own brain, but on viewing and understanding the intricate work he'd performed I was just awe struck ! He's my no 1 hero.....😑

Take care Brie & see you again soon...... xx