GO Slow!

Hello everyone!

I’m 31, been getting MS Symptoms the past year, and at first thought I was having some form of heart attack when I started getting the numbness and tingling in my arms. A few weeks ago, my eye sight went completley in the corner of my right eye.

I’m scared that the doctors arn’t reacting quick enough and as time goes on, my symptoms happen a lot more regular. Would I be best in getting an MRI scan done privately, to speed up the process?

Thanks everyone in advance! :slight_smile:

Where have you got to now, Mrs N? What sort of doctors have you seen and what sort of referrals have been done?

It would be normal, I believe, for the GP to refer someone who suddenly has part of their visual field drop out to the nearest Opthalmology Outpatients as an emergency case. Leastways, that’s what happened when it happened to me. So that brain MRI was commissioned by Opthalmology, although I already had an MS dx, so the MRI was just to confirm everyone’s assumption that it was MS and not something else that was causing the visual field defects. An emergency Opthalmology referral would tend to get you seen much more quickly than a non-emergency Neurology referral, for instance (that can take months). If you have not been referred yet to an emergency Opthalmology Outpatients clinic at your nearest local hospital that does one, I would be asking your GP why not. If he/she feels confident that there is nothing too much to worry about, then you can take some comfort from that of course, but it is perfectly reasonable for you to ask the question.

Generally speaking, speed is not of the essence when it comes to an MS dx. The urgency (when there is urgency) tends to come from the need to exclude alternative explanations that (unlike MS) are emergencies that would require urgent action - some eye things fall into this category, as do some brain things and some other things besides. If your GP thinks that you ought to see a neurologist, but does not think that there’s any rush, then going private is an option, as you say, if you want to save some waiting time. If you select the ‘Near Me’ orange tab at the top of the page, it will give you information about the neurologists in your area who practise privately and who are also NHS neurologists. So you could ask your GP to refer you to one of these people privately. What tends to happen is that anyone who looks (to the neurologist) as though they might have MS (or some other neurological condition) would then get transferred to the consultant neurologist’s NHS list at some point, either before or after investigations like MRI, lumbar puncture etc. That’s what happened to me (I had private health cover at work at the time, but would probably have put my hand in my pocket if I hadn’t).

I hope that you get some answers soon. Please do not be too quick to jump to the conclusion that you have MS. There are lots of things that cause MS-like symptoms. Most people who worry about having MS turn out not to have it. Of course, I haven’t the slightest idea whether you do or whether you don’t - I’m just saying that you do not yet (from what you have shared here) have grounds to assume that you have.

Alison

Hi Mrs N,

Agree with Alison; don’t waste your money on an MRI; they are expensive anyway who is going to read it.

Speed only creates mistakes; if you want to feel like you’re being proactive in getting a diagnosis get an appointment with a good Neurologist private; cost aprox £200. If you want to know a good one in your area ask for recommendations on here.

For interest this is an article written by a doctor about his diagnosis mult-sclerosis.org

Good luck

G

Went to see docs again today, as losing my balance and still have severe tingling in one side of my face, hands, arms and upper legs. Speech is hard today, not speaking very much sense. I feel really weak in my upper arms and the tingling is driving me mad, as struggle to type at work.

Blood tests came back with low Vitamin D and been prescribed High dosage of Vitamin D supplements x 5 everyday.

I know rushing only causes mistakes, but I’m struggling with these symptoms, I feel like they are consuming my life! :frowning:

How quickly were you guys diagnosed? Did you manage with the symptoms well?

Thanks

Hi Mrs N,

It’s obviously a worry when you can’t do simple everyday tasks. Contact Access to Work; lots of help available like speech recognised software for typing; taxis to and from work to save getting tired Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK

I know your having problems talking as well but they can even employ someone to do your typing.

G

Don’t worry about getting diagnosed; the only advantage is you will probably get DMDs. You do not need diagnosis for AtW and morally you do get the safeguards laid down by the Equalities Act.

Mrs N, has your GP referred you anywhere (as I said in my previous reply, it would be slightly surprising if you had not at least had an Opthalmology referral, given your visual field troubles…?)

For my own part, when I first showed up at the GP, she listened to what had been happening over the past few days (it all came on rather suddenly) and whatever she heard or saw must have been a red flag for central nervous system trouble, because she referred me to an NHS consultant neurologist’s private clinic there and then (I had told her that I had health cover through work). But not everyone is ‘lucky’ (!) enough to have such clear-cut symptoms. The neurologist, once my first relapse was clearly resolving, said he wanted to do some watchful waiting for a bit in the hope that the trouble would never recur, and I was happy to agree. A fairly short time later, I had my second relapse, and that is when he sent me for an MRI and I got a dx at the follow-up consult. All this happened over a few months.

Alison