clive 20/02/17
Last reply 1 year ago
Can someone please help

I have just been sent a letter worded -This gentlement’s oligoclonal bands have come back as positive in CSF with fewer bands in serum. This is a predominant immune reaction therefore of local synthesis within CNS consistent with demyelination ?? At a total loss what it means do I or don’t I have ms still no appointment with consultant thanks 🙁

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
1 year ago

@clive, a positive result in this test, combined with your MRI results and clinical history should allow your Neuro to make a positive diagnosis of MS.

There’s some brief details of this test here :-

https://www.mstrust.org.uk/a-z/lumbar-puncture

As you have no appointment scheduled, I’d suggest you contact the Neuro’s secretary and refer to this letter. If possible, ask to take a cancellation at short notice to expedite an appointment.

If this route proves unsuccessful, then contact the MS Nurse for your area. You can locate your nurse here :-

https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services


lucyh
1 year ago

Hello @clive

I agree. If you try to get an appt with an MS nurse I am sure you will be referred back to a neurologist. Someone gave me great advice: you need to ask straight questions to get straight answers. Have a list of written questions and tick them off as they are answered.

Take care, best, lucyh xx


clive
1 year ago

Thanks all but how do I get a appt with ms nurse ? Nobody seeme to be downing a great deal !


lucyh
1 year ago

Hi @clive, you are going to have to do some ground work, start demanding things etc. Google MS nurse in your local hospital. Call and tell them you want an appt with an MS nurse. When they say: have you been diagnosed (and you say no) tell them you want an appt with a neurologist. You need a number to call to make the appt or you need them to make the appt for you. Be nice, but firm.

It is difficult….you’re at such a tiring and low point…and then you have to fight some more to get the help you need. Take care and see if you can find someone else to help xxx


clive
1 year ago

I’ve spoke to a ms nurse & she is going to try and push things along thanks Lucyh & stumbler xx


stumbler
1 year ago

@clive , you’ve learnt an important lesson there. Things only happen when we make them happen.

Always be assertive, but always be polite. 😉

Post Comment

You must be logged in to reply to this topic.