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So confused

Hi all, I’m new to this and wondered if someone on here could help me. I had my first neuro appointment last week and have received a copy of the letter sent to my doctors but I don’t understand some of it, it says

pathological findings have been pale disc on the left, hypaesthesia on the right side of face mainly v2 and v3, slightly more prominent reflexes on the right but not brisk.

I don’t know what any of this means and I don’t see her again until after Christmas. I’m waiting for a head and spinal mri . The only part of the letter I realy understands and it scares me is where it says the above clinical features are pointing towards underlying demyelinating disorder such as ms.

Please if someone could explain the rest I would be most greatful.

Hi Mandae,

Gosh! that sounds like a lot of medical jargon for sure. Don’t be shy to ask. Perhaps the best and quickest way to get a proper explanation would be to ring your GP and sit down with him/her with the letter so as to put your mind at ease before Christmas. Try not to worry too much Mandae, I find personally that at least when you have a good understanding of what’s being said it really helps. Go for it!

Take care,

Ro

Hi Mandae, the face part sounds like trigeminal nueralgia, v2and v3 are branches of the fifth cranial nerve. I only know this because I suffer from it. Have you pain in your right jaw,

ann x

I do get trigeminal neuralgia which I did tell her, but she felt both sides of my face and asked if I could feel one side more than the other, which I could. How do you cope with the neuralgia. It is so awful and nothing I take touches it. I used to just get it for about 9 hours at a time but I know get it for days, last time it lasted for a week and a half.

I am on nuerontin for the trigeminal nueralgia which does help. I agree the pain is horrific,I have a great gp who has prescribed morphine for me to take when it gets unbearable. Like you my pain can last for a couple of weeks. What medication do you take for it.

Ann x

Unfortunately absolutely nothing, my doctors are useless. I have had to fight every step of the way to get to this point, 3years ago when I first went with my symptoms I was told I had fibromyalgia and I had to demand to be sent to a rheumatologist for a proper diagnosis, my doc said there was no point cos it won’t change anything. Then the rheumy sent them a letter saying I should see a neurologist which for six months they said they had not recived so I gave up. So when my symptoms came back a couple of months ago I had to demand to see a neurologist. When the doc looked back at my notes low and behold there was the letter from the rheumy. I have to fight for every thing I want and they keep trying to give me tablets like pregabalin that they know I can’t take. To be honest he only cares about his private patients, last time I was there he even took a personal call in the middle of my appointment!