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Newly diagnosed ms member

Well as i was posting on this forum, i had my meeting today with my ms specialist and have now been diagnosed with (RRMS).

My doctor was fantastic first time ive seen him he gave me a full check up/ test asked lots of questions and then showd me my mri scans on his computer. It was quite shocking to see all the new lesions in my brain and on my spine .

He told me what i had plus he explained the severe nerve damage that had been caused by it.

Hes assigned me a nurse and is setting up my dmds for me gave me 2 booklets on each drug (Tecfidera and Plegridy ) and said he and the nurse would both talk it through with me. I cant speak highly enough of the guy.

So here i am now a fully paid up member of the ms family lol .

As i said to him i wasnt shocked even though i was ( if you get my meaning )

Best Wishes Iain xx

Totally get your meaning Iain.

Welcome to the club we’d rather you weren’t a member of.

And it sounds like it was a positive and useful meeting. You now have some tools at your disposal to try and chase off disabling relapses.

Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid It should give you info about which DMD to opt for in advance of your meeting the MS nurse.

In my opinion, (and from info on the Barts Blog) Tecfidera works best when it’s the first DMD a person has tried. It also has a better relapse reduction rate than Plegridy.

But it’s completely what fits with your lifestyle best as to what you should opt for.

Let us know how it all goes, and come and join us in the Brain Fog thread. It’s silly nonsense a lot of the time, but I suspect you’ll fit in quite well.

Sue

Thanks Sue.

As i said the guy was a diamond very nice very helpful and has given me a load of paperwork on the drugs open to me.

He did say he would go with rrms for now but thought id be moving into a different catagory soon because of all the new lesions he said he wanted me in the system so they could now start helping.

Im glad im not in limbo land and that it only took 4 months to diagnose it , mind alot of that is the fact im military and its been pushed.

But id just like to say a big thankyou to the RVI and my specialist for being so speedy.

Best Wishes Sue , Iain xx

Hi Iain,

Sorry to hear about your diagnosis. However, it at least it sounds like you had a good experience. Just out of interest, were you given an appointment with the MS Nurse already? and how long do you have to wait for it? are you in London by any chance?

Was this all done on the NHS?

Not to make your post about me at all. But I feel like I have been quite badly treated (I know most of us feel that way at some stage). I had nothing for 6 weeks or so after a private diagnosis and have had to chase everything every step of the way. Truly upsetting. The neuro discussed DMD’s with me when he diagnosed me in his private practice, but then I heard nothing. After chasing his secretary I finally received a letter for my GP asking for a referral to his NHS practice. I then got an appointment which was canceled (in the post) within 24 hours- NOT offering me another appointment or anything. It has been almost 6 weeks and I have no idea when my appointment will actually be. I am trying to chase but no one seems to be helping (except for my GP, who is trying to chase them too)…

Sorry for the rant and sorry again for the diagnosis. May I ask how long you’ve been having symptoms and what they are? will you tell your work? (not meaning to make this about me again) but I am considering telling my work as I am getting increasingly tired and would do better working at home a bit more. I feel very overwhelmed of the big city and the noises and people in my face every day. I just can’t handle it. My old work were happy with us working from home whererver but where I am now, there is a culture of distrust. But I really feel I would do much better if I had that freedom and would just feel less exhausted every day.

Thanks for reading.

Emily

Hi Iain,

Sorry to hear about your diagnosis. However, it at least it sounds like you had a good experience. Just out of interest, were you given an appointment with the MS Nurse already? and how long do you have to wait for it? are you in London by any chance?

Was this all done on the NHS?

Not to make your post about me at all. But I feel like I have been quite badly treated (I know most of us feel that way at some stage). I had nothing for 6 weeks or so after a private diagnosis and have had to chase everything every step of the way. Truly upsetting. The neuro discussed DMD’s with me when he diagnosed me in his private practice, but then I heard nothing. After chasing his secretary I finally received a letter for my GP asking for a referral to his NHS practice. I then got an appointment which was canceled (in the post) within 24 hours- NOT offering me another appointment or anything. It has been almost 6 weeks and I have no idea when my appointment will actually be. I am trying to chase but no one seems to be helping (except for my GP, who is trying to chase them too)…

Sorry for the rant and sorry again for the diagnosis. May I ask how long you’ve been having symptoms and what they are? will you tell your work? (not meaning to make this about me again) but I am considering telling my work as I am getting increasingly tired and would do better working at home a bit more. I feel very overwhelmed of the big city and the noises and people in my face every day. I just can’t handle it. My old work were happy with us working from home whererver but where I am now, there is a culture of distrust. But I really feel I would do much better if I had that freedom and would just feel less exhausted every day.

Thanks for reading.

Emily

Hi Emily.

I have been seen by the RVI whch is in Newcastle . My specialist who i saw today for the first time ( the other guy who i was seeing was a Neurologist but his was n epilepsy and i thought he was very off almost like it was all in my head )

But my guy today sat me down showed me the damage explained it all to me and told me what would happen next . He gave me a pack up with the drugson offer which he thought was best , but said him me and the nurse would all sit down together and go through the pros and cons of each . Ive beengiven the number of the nurse but will wait till the specialist brings me back in.

To tell you the truth my army doctor is chucking pills at me to try and calm the symptoms down till i get the DMDs . As you can guess im in the army ive lived through the problems for a while being a man and knowing best but in June this year i got very bad legs wouldnt work at all couldnt feel anything below my waiste and thebig one was wetting myself that was it off i went to carlisle they did tests and a couple of hours later im being blue lighted 70 miles to Newcastle.

More tests 2x MRI lumber puncture ( painful christ never hurt so much in my life , i know soft ass man lol ) steroids pumped into me and let out 8 days later with cis being diagnosed , today i was upgraded to rrms .

This forum is superb lots and lots of very clued up people on here they all have ms and dozens of different symptoms you will get loads of help.

But as a last Emily ring the secretary up push push its your health love make someone hear you i promise they will.

Best wishes Iain xx

Hi

I was diagnosed a week ago and completely get your meaning!

All the best.

Hello everybody

I have been diagnosed with RRMS a week ago, six month after my secon child was born. It took them 2,5 month to give me the answer. My family is devastated, but I am OK, well what can I do. It is what it is. I wish everyone all the best.

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Hi Evelina sorry to here you have been diagnosed so soon after giving birth to your second child.

But luckily you have been diagnosed quickly like myself , some of the members on here have been in limbo for years which must be truly awful.

Best wishes Iain xx.

Welcome to you both, I am also a new be, (5/6 months since Dignoses, but it still feels like only yesterday) but this is an amazing place to be able to share real feelings and get answers from some very knologable people. When I am wobbling I come here, it’s sort of my emotional safe place. I just need to find a way to be brave enough to be real in the real world.

That is a lovely way of putting it Sarah, an ‘emotional safe place’. Eventually you’ll arrive at a safe place in the ‘real world’. Meanwhile, I hope you all feel comfortable in coming here and letting out some of those emotions that are welling up inside.

Sue

Iain

you have explained the army’s support very well.

cheers to the Forces!!!

good to meet you.

carole x

Hi Lain

Thank you for your message. Sorry for late reply but I haven’t log in to this website for a while. You are right. The waiting time for the diagnose is awful… I was very lucky indeed to find out so quickly. I wish you all the best. Good to know I can talk to somebody. Take care. Evelina. X

Hi Lain

Sorry to hear that you have been diagnosed with RRMS.

Thank you for your message. Sorry for late reply but I haven’t log in to this website for a while. You are right. The waiting time for the diagnose is awful… I was very lucky indeed to find out so quickly. I wish you all the best. Good to know I can talk to somebody. Take care. Evelina. X

Dear Sarah

Sorry to hear about your diagnosis. I quite well understand every single word you wrote and felt emotion in them. Look after yourself. Best wishes. Evelina

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