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1st appointment.

Hiya,

I hope everyone is well.

Do any of you know if I will get prescribed any treatment tomorrow?

I really want to get it all started. I had my 1st physiotherapy appointment on Monday and I have my next appointment booked already.

Best wishes,

Jo

Hi Jo

I’ve just had to whizz back and remind myself of what you’ve said before.

To be honest, I don’t know whether you’ll have any treatment recommended tomorrow. Honestly, I doubt it. You have to remember, that for you the time has dragged. For the NHS it’s moved fairly smoothly!

Take with you details of what symptoms you’ve had, when they began and how long they’ve lasted. If anything has completely disappeared, then estimate how long they lasted. If any symptoms have just appeared and not gone away, you’ll need to tell the doctor those things.

Expect to have a neurological examination and some idea of what the doctor thinks.

But you may not come out with anything absolute concrete. You may be given the details of an MS nurse who will liaise with you with regard to disease modifying drugs.

Don’t forget, it’s a good idea if possible to take someone with you. Regardless, if there’s anything you don’t understand ask for details. Let us know how it goes.

Sue

Hi Sue,

I think I’m in a dream world because I’m hoping I will have some idea of what will come next.

I will tell the Dr what it is doing to me. I can’t even get down the local shop without nearly falling, and I can’t do too much which involves standing because my back ends up hurting really badly. I will also tell her about my last trip to Oxford to see Shaun Evans and how it ended so badly.

I just feel like I’m not getting where with this at the moment.

Still roll on 1:30 tomorrow afternoon when I have my appointment. My Dad is coming with me and if he finds a parking space hopefully he’ll come to the appointment with me.

Thanks again for your response.

Best wishes,

Jo

Hi Jo

Sue’s given some good advice. Regarding whether or not you’ll be prescribed anything, it will depend on different things, and also what kind of treatment you mean. Basically, there’s 3 different types of medication we have, for different purposes.

Disease Modifying Therapies (DMTs) are used to reduce relapses and slow down progression. Each one will have different criteria to be eligible. If you are, you should be given info about the different ones available, and you’ll need a bit of time to think about which one is best for you.

Steroids are used to treat relapses, and speed up recovery from them. If the neuro thinks you’re having a relapse, then you may be prescribed a short course of them (usually 3-5 days)

Then there are different medications to treat specific symptoms, for example pain and spasms. It’s possible the neuro could prescribe something, though they’re more likely to be something to get from your GP.

Good luck, and ask any questions on here as much as you need to.

Dan

Hiya,

Thanks for your response Dan. It’s really interesting reading.

I had my appointment today. The Dr said that I’ve been diagnosed with the right type of MS which is the Primary Progressive type. She also told me there is no medication for this type. She has referred me to an MS nurse. I have also been given my next appointment which is in July. I’ll be having another MRI scan and a lumbar puncture. So I guess I’ll be living with it.

Best wishes,

Jo

hi jo i’m very sorry that ms has gate crashed into your life. it’s just plain rude! however you still have a life to live. you may need some sort of walking aid, stick, rollator, wheelchair. occupational therapy could help with things to keep you safe in the home such as grab rails. ask your ms nurse about this. when people offer you help try to accept it. make sure that you have opportunities to socialise, maybe a restaurant or pub with your other half. maybe the ms society group local to you. the ms therapy centre are excellent, usually near a city. i go to the one just outside of manchester, where i have HBOT (Hyper Barric Oxygen therapy) which involves sitting in a decompression tank breathing pure oxygen through a mask for 60 minutes. make sure to take a book or kindle otherwise you’ll be bored silly. the social aspect of the centre is brilliant. your life has changed so go out and make stuff happen! carole x

Hi Jo,

Two things, an LP is for diagnosis, why are they putting you through that if you’ve been diagnosed?

You can purchase a copy of your MRI; ABOUT £10, always handy as often they lose theirs and then you have a copy for comparison with the previous one.

Hi Jo

I was diagnosed with PPMS about 8 years ago and the most important thing I have done since then is exercise.

When things like walking, or even standing in the kitchen to make a cup of tea gets hard, it’s important to keep as active as possible. Your physiotherapist is about to become your new best friend. They will advise you which exercises will benefit you most.

My mantra is: If it’s not difficult, it’s not worth doing.*

Best wishes,

Anthony

*It is also what my Tai Chi teacher says.

Hiya, Thanks for all of your responses. They are really nice to read, Carole, you are so right about MS gatecrashing my life. I’m hoping to get better and be able to go to the Endeavour filming to see hot Shaun Evans in Oxford. I have crutches and a rollator with a seat which I’m still learning to use. I do have a Physiotherapist, I think she mentioned the Occupational Therapist. I have bought myself a few exercises DVDs, back exercises, pilates and yoga. I told my Physio about them and she told me I’ve done the right thing. I do have an MS place that is quite near to me so hopefully, I will be socialising with them one day. Anthony, I will be making a start with my exercise DVDs over the next few days. Especially the back one. I read the reviews on Amazon and they were all very positive about it, so I’m looking forward to that may be helping me. Thanks again everyone! Best wishes, Jo