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Pre-diagnosis questions

Hi all, This is my first post as I’ve not yet been diagnosed,so hello! Just a couple of quick questions, if anyone has any insight? Am coming out of the other side of a nasty 2 week bout of optic neuritis. This is the second time I’ve had it in 4 years, although it wasn’t as bad last time. I’ve been referred for some more tests as my bloods came back OK, and although everything looks to be healing alright according to the ophthalmologist at the hospital, I need to have a field vision test and evoked potential test. I have also had an appt through for an MRI (on the NHS) the end of next month - I had to push for this as the doctor didn’t seem that bothered, although her concern seemed to slightly increase when I mentioned I’d had ON twice. I was wondering if it makes more sense to have an MRI privately, sooner than the end of April? Is anything out of the ordinary, more likely to show up now as opposed to in a few weeks time when its settled down? (I have healthcare through work - would just need to pay an excess) In addition to the ON, I have vertigo in the form of BPPV (have suffered for about 5 years on and off), I have a lot of headaches, am always tired, I have a random twitchy right thigh muscle and I seem to fall over quite a bit! Am not sure if I’m adding 2+2 and getting 7 though! Do I sound paranoid?! Thanks if you read this far! x

I also have pulsatile tinnitus- forgot that one!

Hi starry ear, sorry I’ve no advise but following as I’m currently going through 2nd bout of (suspected) Optic neuritis, first was Nov time accompanied by pins needles left hand, and now is right eye and cramping right leg 24/7. I’ve an appointment with opthalmology soon and then no doubt a bit of a wait for mri. I’m thinking about getting added to my partners bupa for the same reasons. I’ve read people say you can get dvd or whatever of the scan and then bring to nhs.

I think you can get a DVD there has been one post I think that said you could. I would hold off going private as you may get a quicker appointment anyway, so I would wait until you get the appointment first. I had a MRI in August and and an appointment with the neurologist October (I didn’t know that I was to have one, so it was very much a surprise that I did have one), it was the next appointment that’s driving me loopy because I got the second appointment with the neurologist in December for this April. It’s the waiting that’s the problem because you don’t understand what is a symptom or is your body screwing you around. I feel that way. One thing I do know and that is I have double vision and I do have demyelinating disease like lesions in my brain but is it enough to give the neurologist an idea what I have. I hope your appointment will be quick and you know what you have as waiting sucks. Kay

Hi

Who has referred you for the MRI? Is it your GP, the ophthalmologist or a neurologist?

To my mind, you need a referral to a neurologist. When you have an MRI scan, The radiographer sends a report together with making the scans available to whoever booked the appointment. But you need a neurologist to make any kind of determination as to the potential diagnosis of what’s going wrong with you.

That doesn’t mean don’t have the booked appointment for the MRI, just ask for a referral to a neurologist. If you do that through your GP and the wait is too long, then use your work healthcare to get a private neurologists appointment.

If you stick with the NHS MRI, then that will have short circuited the process a bit, and given that you’ll need a neurologist to read the scans, there’s no point in hastening the MRI by having that privately. The point Kay made about getting the MRI scan on disc is a good one. When you go for your MRI, ask if you can get a copy. Some hospitals charge for scan copies (anything up to about £30) but others don’t charge at all. That way if you do end up seeing a neurologist privately, you can let them see and read the scanned images.

Best of luck.

Sue