Think I've just been diagnosed???

the neuro’s team includes the ms nurse(s) and other neuro consultants.

it will happen as it happens.

good luck

carole x

DVLA

Got letter back from DVLA today saying I have to serender my licence and be issued with a 3yr licence dew to my medical condition. Have the DVLA just diagnosed me with MS before my neurologist ? If so that does not seem rite I’m sat here trying to take it all in. i just keep reading the letter again & again

hi gaz

contact your neuro either through his secretary or through your ms nurse.

ask when you will be officially told.

it’s just not good enough.

i bless my lovely neuro who told me via my mobile phone as soon as he knew my results.

german efficiency at its best!

carole x

Just had appointment neurologist said he doesn’t think it’s MS he thinks it NMO WHATEVER THAT IS so HAVING BLOOD TEST and LP to see looked on google it sound just like MS

Hi Gaz

I’ve just googled it too and (even though trusting Dr Google is wrong!) it does sound remarkably like MS. I wonder what differences there are. Maybe the types of symptom differ in that the attacks tend to hit the optic nerve and spinal column. Oh blimey though Gaz, I just saw that treatment for relapses is similar to MS, i.e. steroids. But the only treatments are scary. Apart from Azathioprine (which is an immunosuppressant), there’s a bunch of chemo type therapies. And a few other things, but nothing like the DMDs that are now available for MS.

I hope the neuro’s wrong and it is MS. And it’s not often that I’d say that. It’s just that treatments for NMO seem to be a bit like MS was 20 years ago, i.e. thin on the ground. And the fact that it’s quite rare means that there’s no real incentive for the drug companies to work on better treatments.

What swine these neuros can be. Telling you something you’ve never heard before and then sending you away, with ‘oh we’ll do some more tests’! Gits!!

Sue

Sue it does state in the McDonald crytira if there is a lesion in the Brian stem witch I have then they have to test for NMO to rule it out as to many people have been wrongly diagnosed ms. I can’t understand why he doesn’t think it’s ms all my symptoms point to ms? Hopefully the blood test results will be back soon

Anybody no how long for blood test results

If the test come back positive for NMO he said il start treatment straight away if negative he will see me in 6 months. Why should I have to wait 6 months why not do more tests to see what’s wrong with me?

Re length of time for blood tests, piece of string maybe? I know that if the request is marked as urgent it doesn’t usually take too long, if not then can be days (e.g., basic bloods in A&E takes an hour, but taken in my GP surgery, a week!).

If the NMO test comes back as negative, then will you be expecting the neuro to diagnose MS? Or just leave you hanging around in limbo?

If only we had time machines, just to go back to the medical appointments where we could have asked all the flipping questions we think of too late.

My suggestion Gaz, if your blood test comes back negative for NMO (as expected), then phone your neuros secretary and explain what’s happened so far, and try to get an appointment. At the very least, get the secretaries email address, you can email him/her and get them to pass it on to the neuro.

Sue

Thanks for the reply sue

i don’t no what to expect if it comes back negative he’s already said he doesn’t think it’s ms god nose why all my symptoms point to ms. I’ve lived with this since 2003 I’m not waiting 6 more months to see him again I need to no what’s wrong with me. It’s like he’s waiting for me to have another attack?

The blood test for NMO (Devics) is not a standard blood test and I don’t think it can be turned round as a matter of routine like a standard “Full” Blood Count (that doesn’t actualy even test for things like B12 - so hardly full). There are only 2 places in the UK that do the test - Walton and the John Radcliffe. Don’t know how long it will take but I know that my regular JCV testing - which has to go to Denmark - takes a month.

I don’t know if you have seen it but there is what seems a very good site about NMO Devics on the NHS Web pages that talks about diagnosis and treatments for NMO. Can’t link on the phone but if you Google NHS + Devics + NMO you should get it. (I am not a fan of Dr Google but the NHS websites about various conditions and their treatment. I tend to avoid the American websites like Web MD like the plague - even if I was looking for info about the plague)

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NMO blood test back its negative thank god. so what next will it be more test or will get diagnosed with MS and finally start some treatment to slow down more attaks My biggest fear now is if it attacks my good eye. Does anybody have any ideas what happens next

Hi Gaz (again)

Good to know the blood test for NMO was negative. But there you are now, dangling away in limbo. How f’ing annoying.

Why don’t you phone your neurologists secretary and ask him/her what happens now?

Earlier on you said your neuro would see you in 6 months if NMO was negative. That means waiting till August to get any further. And your neuro only said he didn’t think it was MS, but NMO instead. So you really need to know what further tests they can do. Looking back through your posts, in January you were told it was MS, in February it was NMO, in March (i.e. now) ???

I think if the neuros secretary can’t get you some answers or help you to get an appointment with the neurologist, get onto Patient Advice and Liaison Services (PALS). Their job is to assist patients with problems like yours.

Best of luck Gaz.

Sue

Thank your advise Sue I’ve just phoned secretary she will ask the Nero tomorrow and get back to me. If he just says he will review me in 6 mouths i wont be happy with that. So I’ve made a docs appointment for Friday as back up plan. Everywhere you look it says early diagnoses is important? Is this a joke my first attack was 2003.

Gaz

The trouble is that a first attack can look like a one off. And then you may get little blips in your life which you work around and compensate for until you get a relapse that you just can’t ignore. I was undiagnosed for 5 years after my first relapse p, but at that time diagnosis was of less value than today because there just weren’t the DMDs there are today.

Sadly your long route to diagnosis is not untypical.

I hope your appointment happens as soon as possible. Good luck.

Sue

Hi sue secretary phoned this morning I’ve to have LP done when appointment comes see what they find then take it from there.

Anybody no what there are looking for in the LP if it comes back clear does this mean I’ve not got MS or can it be clear and still have MS? He said he could not find my results from 2003 I defo had it done you don’t forget when they catch a nerve hope is doesn’t happen again.

Hi Gaz

If there are ‘Oligoclonal bands’ in the CSF, I think that MS will be diagnosed, given your history. But if it’s negative for O bands, MS is still possible but not definitive. Have a look at Lumbar puncture | MS Trust

Sue

Hi Gaz So frustrating I know. I’m in limbo myself waiting for results from the Neuro. Feels forever that they take to reply. I suffered with a severe case of Optic Neuritis last year. My vision is very very poor in that eye. My brain MRI confirmed lesions so was referred for LP. I too was tested for NMO but negative. My LP confirms positive for the bands too. I’m suffering with pins n needles every day and I’m hoping this will be the 2nd relapse for diagnosis now. The waiting is awful and I’m not even booked in to see my Neuro again. Feels like you are sent away to deal with things yourself. Keep pushing for your answers. Good luck. Emma