Got Neurologist Appointment

[HollyParker]

Hi.

 

So I have my appointment. My doctor wrote that it's urgent, so I am being sent to a hospital quite far away, because the local hospitals has a 6 months plus waiting list. I'm being seen in July, the 12th. There was a closer date, but it was during one of my exams, which I can't miss.

 

What can I expect? This is my first appointment with a neurologist, though I have had an MRI before because about 15 years ago they thought I was epileptic. They found something on my brain then which resembles a lesion, but nothing ever came of it and I was diagnosed with type one diabetes which kind of took over.

 

All my symptoms after I've put down to diabetes, or over working, or whatever. (I did wrote all this in the introduction). But I am on the insulin pump now so I don't hypo all the time like I used to, but I still get dizzy spells and vertigo. And I've been tested for damage to nerves from diabetes, and my pulse and reactions and that are fine. Diabetic consultant says I haven't been diabetic long enough or had bad enough control to cause damage, and the tiny blip on my eye (one burst blood vessel) wont cause my blurry vision.

 

Thing is, I've been scared to tell anyone that I've been getting numbness, pins and needles, and pain, in my right arm and hand, because I was scared I would be told it's diabetic damage.

 

I've been seen by rheumatology because they thought I had rheumatoid arthritis, but the only thing the rheumatology people found was that I'm hypermobile. They did point out that by grip is weak, but when I pointed out my claw hand (my fingers wont straighten in my right hand unless I force them to by my other hand) they just said they didn't know what caused it and gave me some exercises to do (which make it worse).

 

A few years ago I was diagnosed with trigenimal neuralgia. But they did a scan of my head to look for nerves touching blood vessels and found nothing. I never got to see a specialist for that, and I didn't really push it because I decided it was probably tooth pain (it went to my forehead but I figured it was probably caused by tooth ache). My GP wasn't so sure. She's lovely, and really listened to my symptoms. All the stuff, blurry vision, hand issues etc, tends to be on my right side mostly.

 

I fall over a lot. Sometimes it's because I trip. Sometimes I have no clue.

 

I have no balance whatsoever. My husband is doing a degree is psychology and so has to do some neurology in it. He has done some of the tests onme already like getting me to stand still then close my eyes. Apparently I sway, but last week or so I actually fall over. And I can't do the putting one foot in front of the other.

 

Anyway, what can I expect from this first appointment? And what do I do?

Schedule

Edited 17 May 2016, 8:49 pm by HollyParker

[Nick]

Hi Holly,

 

The appointment will proably last around half an hour and the neurologist will do a simple series of tests, seeing how your reflexes respond, tests like you mention, eyes closed, eyes open and follow a finger and touch your nose from an outstretched arm.along with seeing how you are able or not to move hands, legs.

He will also ask you a lot of questions.

It can be very useful if you start writing notes now on all your symptoms and how and when they occur. Do this roughly as you go along (A diary) and then before you go to the appointment make a concise bullet point list. You can also be thinking of the things you want to know about from her. Take somebody along as this can be useful in that they may want to add something AND they will probably remember better what was said.

All the answers won't come I am afraid. it takes time to build up a picture of your own situation and the neurologist may want further evidence and time to build up a better picture.

 

Hope that helps.

 

Nick

Edited 17 May 2016, 9:05 pm by Nick

[Nindancer]

Nick is right, a list is helpful. I didn't really understand what I was referred to neurology for, my spinal MRI was relating to trapped nerves (or so I thought). The neuro will run through a physical after discussing your health. I was undergoing a load of appointments with Gastroenterology, they kept saying it looked like crohns but not all the tests matched up... needless to say, I didn't think bowel frequency/urgency had anything to do with my occasional walking problems! A list can really help on that score, when I did eventually wonder, I asked neuro & gastro and they said no. It took a 2nd colonoscopy before anyone could agree that MS could have been the cause of my occasionally bad IBS, not crohns disease after all.

My diagnosis came completely out of the blue for me but that seems to be quite unusual. Seriously, anything odd, you should mention it.

Good luck

Sonia x