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Confused on ms

Hi I’m new diagnosed with ms and waiting to hear from my ms specialist and neurologist for the first time since I have been told I have ms. I guess I’m feeling a little confused and worried as to what the next step is. How long do people normally wait for an appointment after being diagnosed? Is the first lot of treatment the same for everyone or do they try different ones for different people. Any help or advice would be amazing as I’m feeling abit like an emotional headless chicken at the moment. Thanks

hi sarah,

well at least you now have answers and know that your not (yet) mad.

the next steps should be being put in touch with your ms nurse and to choose which DMD you wish to take.

do you know anything about these drugs?

the ms trust has a good leaflet about these called Making Decisions.

stay calm and have a good read so that you know what the ms nurse or neuro is talking about.

if you have RRMS there is a wide range of choice.

you will first be offered one of the 1st line treatments.

injections such as rebif and copaxone.

tecfidera may also be an option.

your ms nurse may also refer you to physio, occupational therapy, continence nurse etc.

these are all useful services.

good luck

carole x

Thank you for replying Carole I don’t know anything about the treatments on offer and will give the leaflet a read. I have just got my appointment through to see the neurologist on the 22nd so want to be prepared so I know what he is talking about. Thanks again for the advice x

Hi Sarah,

Yes as Carole says; the MS Trust https://www.mstrust.org.uk/understanding-ms/diagnosing-ms/newly-diagnosed-multiple-sclerosis

And

The only thing legally you must do is advise the DVLA. Not legal but obvious advise your driving insurance company. They will not increase your premiums; that would be discriminatory, but if you make a claim they could wriggle out of it by saying you have not advised them of your diagnosis.

Also if you have a mortgage do you have ‘critical illness’ cover. If so claim; you could be mortgage free.

If you have not seen a Neurologist who diagnosed you?

Good luck

George

Hi Sarah,

Yes as Carole says; the MS Trust https://www.mstrust.org.uk/understanding-ms/diagnosing-ms/newly-diagnosed-multiple-sclerosis

And

The only thing legally you must do is advise the DVLA. Not legal but obvious advise your driving insurance company. They will not increase your premiums; that would be discriminatory, but if you make a claim they could wriggle out of it by saying you have not advised them of your diagnosis.

Also if you have a mortgage do you have ‘critical illness’ cover. If so claim; you could be mortgage free.

If you have not seen a Neurologist who diagnosed you?

Good luck

George

Hi Sarah

The MS Trust do have a whole load of information which is invaluable in finding out about MS.

In particular, have a look at: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

It guides you through the various disease modifying drugs available as a whole, and could be what you need to help you to sort out which DMD to try out.

Do keep aware though, that not all the DMDs are available in every prescribing centre, so your neurologist may want to steer you onto a drug which is available locally rather than what you would ideally prefer to take. You should find that the old style injected DMDs (Copaxone, Avonex, Rebif and Betaferon) are available everywhere, as is Tecfidera. Gilenya may be too. Tysabri is generally a second line drug treatment. Lemtrada isn’t available everywhere, plus is usually only for very highly active MS.

In terms of how long you will wait for an appointment, it might be a good idea to contact your neurologists secretary to ask that very question. It shouldn’t be too long. You should also be given the contact info for an MS nurse. You will hopefully find that an MS nurse is a wonderful source of support and information. S/he ought to be able to help guide you in terms of both your local services and your options for a DMD.

Sue

Thank you for your advice, no I haven’t seen him yet got told my results on a letter. I have an appointment on the 22nd to speak to him which is quick as last time I waited 10 months for my test results.

Thank you for your advice

Hi there,

sorry to hear of your diagnoses. I was diagnosed April this year and it almost broke me. Waking up- telling myself I have ms even before I got the chance to open my eyes!

it really has eased, and I am getting used to the fact that my life will be slightly different, but I am the same person. Of course some days I feel down and others I try to act as normal as possible. Good luck with your emotions at this pain in the ass of a time!

with appointments- I’ve been lucky, but that may be because I have chased everything! Neuro said I had ms and i will be referred to an ms nurse. So I got the number online and called the ms nurse the next day asking how long I should expect to wait? She called me back that day with an appt. she has been very good I seen her twice within 3 weeks.

they arranged me to take tecfidera and that is what had been the longest wait. But that’s the delivery company!

i got the choice of a list of medication so you should look them all up on this site and see how you feel about them. Nurse should tell you which ones you are eligible for, then you can discuss them.

my meds should be delivered tomorrow- I’ve waited 5 weeks for them now they’re coming I don’t look forward to any side effects but I guess the good out weighs the bad.

i would advise you chase everything- put your name out there so they know who you are up at the top of the pile, it seemed to work for me, the only thing I didn’t chase was the swallowing assessment because I felt I needed that less urgently and that is the longest wait I had. So chase up what you want answers for and good luck with everything :-))

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Thank you so much for your reply I’m hoping things start moving soon as I am regularly passing out with isn’t good as I have two kids. I’ve been reading some of the advice on medication online. I hope everything works out for you and that your meds don’t have too many side effects. Take care