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Leisions found

After having symptoms of ms or similar for some years now doctors thought it was fibromyalgia until things started getting worse and having problems with my eye, back, fatigue, neck, numbness and pins and needles, shaking that is getting worse but I don’t shake all the time I am forgetting that I have said things to my family and say them over and over I forget words names.

Doctors did a mri and I have brain leisions a few that’s all I was told they also compared it to a one I had done years ago approx 15 years my GP says there is a difference he wont say it could be ms as thinks I need more tests (i only had a brain mri ) after seeing him yesterday he is sending my to see a neuroligist I’m so pleased I have met this neuro before he is great as I have epilepsy he was the only one who got me fit free.

Any advice for now or when I see my neuro or gp would be grateful thanks x

keep a diary of symptoms when they began or ended.

as you already know your neurologist it should be a bit easier.

are you aware that the new thinking is to get onto a disease modifying drug (dmd) as soon as diagnosis is made?

it would be to your advantage to research these and make a shortlist of which you wouldn’t go near and which you’d love to try.

i did that beginning with ruling out the ones whose side effects put me off.

then which gives a better percentage of relapse reduction.

take someone with you because these appointments are very intense and it’s easy to forget the questions you want to ask.

this person can help you to remember what the neuro said.

stay calm

carole x

Hi carols

Thanks for your comments I have been keeping a diary for some months now my GP advised my to. Thanks for the advise about the disease modifying drugs I had no idea about medication hadn’t even thought that far yet but will be looking into this now. My husband is going with my to my appointment and will be making a list of what I want to ask and family history.

I’m trying to stay calm but everything is taking so much time. Again thanks for the advice.

Hi

Have a look at the MS Trusts decision aid tool: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

This should give you an overview of what disease modifying drugs are possible. As for what’s available to you given your MS and in your area, it may be that you don’t have a complete choice of all drugs, but it does help to understand what the different drugs are and the various criteria to have them prescribed.

Sue

Hi Sue

Thanks omg the side affects are frightening I think I have chosen two first if they come back and tell me it’s ms. But I have to wait for my neuro appointment to come through.

Thanks again karen x

I second (or third?) whoever said to take someone to the appointments with you. My other half always attends with me and has The Book of Important Information at all of them… I even refer to him as my Information Gatekeeper but my neurologist thinks I’m best part bonkers anyway so no harm done.

The drugs can look scary and I always thought it was a bit mad that you’re put in charge of choosing your own - I wanted someone to sit me down and tell me which one was best. I’ve only changed once, from Avonex to Tecfidera. Tec has some awful side effects listed but none of them are guaranteed. If we all read the leaflets in paracetamol boxes, I’d imagine they’re bad too!

Do your research, don’t be afraid to ask for advice, and be your own advocate as to what will suit you and your lifestyle

Smidge x

Hi Smidge

My husband is going with me on my appointments he always does he helps me as I forget things. I have been keeping a diary for a while now with my husbands help and he is going to help me get ready for my appointment with my neuroligist first appointment.

I have been doing the research about the dmd medication and find it hard to pick really as I’m on a lot of other meds so doctors may have to advise not sure but open to this if I do get a diagnosis.

Thanks for advise.x