Hi All,
Little update about me, currently with partial myelitis diagnosed, had symptoms for 15 months now.
Neuro did repeat MRI on 7th june. Had to phone his secretary today to see what i needed to do etc.
Phone call went as follows:
Results of MRI are abnormal, more inflammation present and neuro has asked that i get next available appt. Secretary will inform him of my newly booked appt on 22nd July, and if he needs it sooner she will contact me!
What now? Is he waiting for appt to tell me i have MS or what? Neuro did say at last appt in may that if i had any more lesions he would start treatment…so wondering if thats what has happened and need face to face appt to tell me?
Do i need to start researching what treatment i would liike to go for so that if he does say its MS i am armed and ready to start treatment straight away?
Panicing a little i will admit! Help please anyone?
Lea xx
Hi Lea,
I’m afraid that yes, it is probable he has called you in to diagnose you. Guidelines say this should always be face-to-face, and not over the phone, or in a letter.
However, my experience is you are NOT expected to make a treatment decision on the day! They consider (rightly, in my opinion) that diagnosis is enough to deal with at one time, so you will probably be given some blurb to take home, invited to think about it, and called in for the treatment discussion at a later date.
Even for people who’ve been expecting it, diagnosis is still a shock. Not wise to make any major decisions there and then.
It’s likely to be at least a few weeks before you can start treatment, in any case (it takes that long to arrange), so “straight away” does not mean that same day. It’s not that urgent. They wouldn’t expect most patients to arrive already briefed about treatment options, and their choice already made. If you want to start looking into it anyway, that is, of course, up to you (MSDecisions is a good website), but I think you’ll have ample opportunity to discuss it, and won’t be pressed for a decision the same day.
Depending on how aggressive your MS appears to be, your neuro may have a preferred route he’d like to go down. Also some treatments may be contra-indicated, depending on your medical history. So it might not be completely free choice; see what he says.
Tina
x
Hi Lea, I had a similar experience; when he had the results of my scan, my neuro called me at home wanting to see me within the following few days, instead of waiting until my next appt a month later. He didn’t want to discuss it over the phone because in his opinion, he said it’s neither professional or ethical (I’m guessing that may vary between neuro’s though). He saw me two days later at the end of his morning clinic. It sounds as though maybe your neuro is ready to give you a diagnosis, but having said that, it’s impossible to second guess (with accuracy) exactly what it is he wants to see you about. Whether you should research potential treatments before having seen him is your call really, but if you do, then I suggest you have a look at the ms decisions website. Steer well clear of any websites claiming to have found a cure, they’re just out looking to earn a fast buck, preying on people seeking genuine help. Keep in mind also, that if your neuro does suggest treatment it won’t be with immediate effect. Funding for DMDs needs approval (which your neuro submits). After that you’ll receive a call from the supplier to arrange the delivery of the drug and either your own ms nurse or a nurse from the company itself will give you some training first. It’s easy to say I know, but try not to worry too much. Let us know how you get on and good luck! Debbie xx
Thanks for the help anitra. I have asthma so betas are out i believe and then i looked on ms decisions website (found it brilliant) and have made a rough decsision of copaxone if i am asked, but would like more time to decide.
I’m sure i will prob freak out a little if he does say ms or freak out alot if its something else also lol.
4 weeks seems a long time to wait i admit but as hubby away til monday its probally best that he gets time to recover after getting back.
Its not aggressive as only 1 spinal lesion on first mri and 1new brain one on new mri secreatry thinks apparently, waiting for neuro opinion on that though…but it only started 15 months ago and i have had 2-3 relapses he thinks. Also not spoke to him yet so not sure what the new MRI says either. To be honest it just seems like 15 long months of permanent crap building up with no breaks at all, but what do i know!!!
xx
Hiya
I’m afraid the road to MS diagnosis and treatment has been a long one for me too. I’ve had symptoms for 10 years, was given a provisional dx in mid November 12, had to wait until 4th Feb to see the neuro for formal dx, then waited until 11th June to see the specialist, where I was expecting to discuss DMD’s, only be told I needed another MRI and a follow up in two to three months. It sucks, it really sucks, and I do feel your pain at the waiting around. I’m not good at waiting at the best of times, and my postman has become accustomed to me almost barrelling him over to see whether he has a referral or appointment letter for me!
I hope your progress happens quicker than mine and you get everything you need soon
Best wishes