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first time appt with Neurologist Mon!

Hi I’ve recently been diagnosed with MS well the results from my MRI well the findings of this with multiple lesions in my brain and spine are suggestive of MS. I’m seeing the Neurologist on Monday. I am very concerned as I know of one person who is under the care of this neurologist and he won’t prescribe her meds. I am the main carer of my severely disabled daughter. I am hoping that he will give me medication.

I think I have had MS for about 10 years. Had a tightness around my middle, right leg kept giving way. I had a serious car crash when I was 19, one of my injuries being a wedge fracture of the spine. My family kept telling me my symptoms were as a result of the crash. I eventually went on to developers pins and needles in my right foot, had a scan but nothing abnormal showed up!

Anyway over the past 4 years I have developed vertigo and double vision each episode only lasts 3 -3.5 weeks. I have also had the touching sensation of someone touching my arm and leg. Including when you bend your head forward you get vibration/electric shock going down yr spine which lasts seconds. This however no longer happens.

I think my family were shocked with the diagnosis as they thought I was hypochondriac complaining about various ailments!

Anyway sorry to waffle on. My main point in posting this is what should I ask my neurologist when I see him and how can I get him to prescribe medication? My relapses just happen out of the blue. I am never ill beforehand. Usually I wake up with something. I currently have tingling hands which is very annoying.

Thank you all for reading this and for any advice you have.

Hi Rachy71

I’m guessing your GP has sent you for an MRI of your head and spine, and has now referred you to the neurologist. Well, if so, that’s certainly got things started. Everyone’s experience is a bit different, but it usually goes something like this…

Firstly, your neuro will want to investigate further, probably order a few tests, ask you a lot of questions, take some bloods and take a medical history. All this will need a little time and maybe, with test to do, several appointments. It is rather unusual to receive a speedy diagnosis of MS, if that is actually what you have; many other conditions will need to be ruled out before anything can be confirmed. So you will most likely need to be a bit patient. Let him,or her, do their job, they will want to be thorough.

When you go along, take a list of what you want to tell him. It is really annoying to remember something important you wanted to say five minutes after you’ve come out of the hospital. Also, you might want to make a few quick notes of what he or she says - sometimes there’s quite a bit to remember. Neuro appointments are usually a lot longer than those with your GP, in my experience they are able to give you much more time. My neuro often gives longer than the 30 minutes booked. I’ve turned up several times and been told that clinic is running late as an earlier patient needed more time. He really is thorough, as I hope yours will be.

Don’t worry about people thinking you are a hypochondriac, a lot of us on here have had to put up with that.

Good luck on Monday, I hope the appointment goes well for you.

Ben

Hi Ben thanks for the reply. My GP wrote to the neurologist with my symptoms and the mri was interpreted by him/neurologist he says in the letter to the gp… the mri brain demonstrates multiple periventricular and subtropical white matter lesions. There are two posterior fossa lesions within the left and right middle cerebellar tendencies.

Within the cord there is a high signal within the cord at the level C7 and I am suspicious of smaller areas at C3, C4 and C5.

Over the MRI findings are consistent with multiple sclerosis. In view of the result I will divert her referral from General neuropathy pooled to my neuro-inflammatory.

He then signs it. I will be discussing this on Monday. I don’t really understand it but it all sounds super scary!

: (

hi rachy

don’t talk “super scary” because it’s the illness that is scary not the neurologist.

just make sure that he/she explains it all thoroughly and don’t be afraid to ask for further explanation.

as ben said, there will be lots more tests and then you will be told which type of ms you have.

rrms is the most common and if you have this type then you are entitled to be put on one of the disease modifying drugs.

this will only happen once you have a confirmed diagnosis of rrms.

​you should also be allocated an ms nurse - these nurses are marvellous.

you might find it helpful to take someone with you to help listen to the neuro, make notes and prompt you to help with your questions.

do your best to stay calm.

good luck, i’m sure you’ll be fine

carole xx

Thank you Carole. I’m taking my hubby with me but when I ask him as he looked into MS he says he hasn’t researched it at all. It may be a woman thing but if it was him with the diagnosis I would be googling everything and all the drugs available. Well I will go there on Monday and see what he says. I hope I don’t have to have a lumber puncture, I think the mri’s are much better now than they used to be.

Rachy x

Well Rachy, it sounds like you’ve been referred straight to the right consultant, he should explain things for you.

Not long to wait.

Ben

hi again rachy

make sure that your husband makes notes for you because talking to your consultant and making notes is difficult if not impossible.

if the neuro doesnt offer you an ms nurse, you can ask for one.

you don’t have to agree to a lumbar puncture, the consultants do them to tick all the boxes.

have a relaxing day on sunday and good luck for monday

carole xxx