I was referred to neurology in May last year after having optic neuritis and strange sensations in my arms and legs. Since then I have only seen my neurologist once, and that was back in August, when he referred me for an mri and sent off some blood tests. He hasn’t talked to me since then and he doesn’t explain my results, he just sends me copies of the letters he sends to my GP. Is this normal? I don’t understand a lot of it and when I’ve rung his secretary to tell her of new symptoms or things getting worse she just tells me she’s made a note of it. My mri “results” say “this has detected several inflammatory lesions localised in the periventricular deep white matter and callososeptal region of the brain. There are also some inflammatory lesions in the brain stem and cerebellar hemisphere as well as in the spinal cord at C2, C6 and C7. The appearances are characteristic of demyelination.” I’ve looked a lot up and based on that and my symptoms I’m pretty sure it’s ms, but I don’t know if I’m just panicking, but I’m really struggling to get a professional to talk to me.
Hi I haven’t spoken to my neurologist since I saw him back in October, I did get a letter from him in November a copy for my GP notes, it does sound like gobbledygook because it isn’t easy for us to understand it. I too got demyelinating disease like legions only one the rest says it to do with my age lol. You also went to dr Google as you do and found that demyelinating disease the most common is MS. During my appointment it was suggested that I have a blood test and lumber puncture. The neurologist then sent a letter in December with a appointment to see him again in April. Have you tried to talk to your GP. I can only guess is that you have demyelinating legions in your spine c2 is where about it is plus. You have a legion in you base of your brain which is where you have your balance. I only know this as my dad had a tumour in his cerebellum and he was really dizzy and had to lie down all the time, sadly he passed away. But less of that. Try not to Google any more it just scares the pants off you. Stay on here and the web site as they can explain a lot about MS. Also only a neurologist can say that you have MS. There is lots of illnesses that have the same symptoms. So that they have to give you lots of tests to find out what it isn’t. Have you had a lumber puncture as that helps with the diagnosis. Best of luck anyway. Kay
It turned out i had ON in 2000, was given a VEP test finally in 2008 which was positive bilaterally, so obviously from that i had more attacks, MRI onwards and upwards LP and another VEP october 2015 and the results in february 2016 positive VEP again and diagnosed finally with PPMS.
I think your neurologist is playing a “wait and see game”. You are not acting like a normal MSER, with relapse and remissions, neither did I.
Now my advice to you is simple. FORGET IT. If it is MS it will show itself and then the neurologist will be able to finally tell you what it is.
I thought i would loose my sanity over the years, and my neurologist told me he wasnt at liberty to give me a firm diagnosis as he had to follow protocol. I havent seen him since 2016. I talk to my MS nurse not that she is much use to be honest, but i think she said i am due a visit in March. (not sure what year lol).
I know its scary but until something more happens its hard for them to come up with anything. So many other diseases out there mimic MS or vice versa.
I would think you need a VEP test to be honest. These can be used for diagnosis i believe. Well mine was. I call it my MS sandwich lol. VEP, MRI VEP lol. Oh and an LP which muddied the waters.
Hello
It certainly sounds like you need to get an appointment sorted with the neurologist to find out exactly what he thinks about the neurological tests and the MRI scan you’ve had and what they amount to.
You are right that inflammatory lesions characteristic of ‘demyelination’ does usually mean MS. Have you spoken to your GP about the results? And is it correct that you don’t have a follow up appointment with the neurologist? That just seems wrong. It seems odd that he’s written to your GP, said you have inflammatory lesions showing demyelination but not stated what conclusions he has reached from that.
If you’ve spoken to the neurologists secretary and she hasn’t indicated that you are due a follow up appointment, I suggest you try contacting the hospitals Patient Advice and Liaison Service (PALS). You can find their contact information on the hospital website. If you tell them exactly what you’ve told us, they should be able to help.
Hopefully you’ll get some definitive answers soon. Let us know what happens.
Sue
Thanks, I suffer from anxiety as well so the past year has been he’ll. I rang his secretary today and she instantly knew who I was when I said my name. She said she’s going to get him to call me some time this week
That sounds like a positive thing. Hopefully it will be soon. And with luck he will be able to either explain what’s going on, or give you an appointment to talk the results through in more detail.
Sue
I’m not sure but I feel like I am having replapses.Ive had three times in the last year or so where I’ve had new symptoms or they’ve come back much worse, then a few weeks later I’m feeling ok again