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What a week on the MS Fairground! x

Hi All,

This week has been a Rollercoaster but most of the ride has been positive.

I had an appointment on Tuesday with my Consultant, I was not expecting any big changes or news. However they asked how things have been and I updated them with my symptoms and how things have been. The conclusion is that they think I probably had a relapse in March when I started feeling poorly and had to go off sick.

They have informed me my presentation is not typical so it might take them up to 2 years to establish the Phenotype for my MS. There is a possibility I could be RRMS or Progressive with Relapses but they don’t want to miss the boat to treat early if I am RRMS particularly as I am only 39 and so active before this, so I have now been offered treatment which I have said I am going to take. I need to know I have thrown everything I can at this to avoid further damage to my CNS but I am doing this knowing if I turn out to have progressive it probably won’t work.

I was offered Lemtrada/ Alemtuzumab or Tecfidera/ dimethyl fumarate I have gone for Lemtrada/ Alemtuzumab and will be starting it on the 13th July. I wanted to share this with you all as everyone here has been so supportive and I am feeling so positive to have a chance to calm this thing down.

They have suggested I try Baclofen 5mg for my foot spasms and see how that suits me. My Physio is also going to book an appointment with the orthotic department for me. Physio is going great I am feeling empowered.

The antidepressants are working well I can’t believe I was so reluctant to try them my emotions are now much more stable and I feel much more rational, even when bad things happen I can stay calm talking about them.

I have been referred to the Psychologist, was not initially sure I wanted this but am so glad now. On Thursday my younger sister got referred to a Neurologist by her GP as she has some MS type symptoms. Individually they all have answers but her GP said given the family history (me) it was better to get her checked out. I hope and pray she doesn’t, she is married with two lovely young children. I feel so bad for my poor Mum she has just retired this should be the time of her life and she is now worrying about both her grown up children.

Sorry for the essay, hope everyone is having a good weekend despite the weather.

Snowqueen x

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I’m really pleased that you are being offered some sort of treatment on the off chance you have relapses. I’m sure most people here would do the same, I know I would. I know there are side effects to every drug but if there’s any chance it could improve your symptoms, go for it, you’ve nothing to lose. Please let us know how you get on.

It is very worrying when someone you love also develops neurological symptoms. My dad has a debilitating condition and my daughter also recently starting with symptoms so I can imagine how it’s worrying you. Fortunately my daughter’s tests came back negative for ms but she’ll be watched now by the Neuro. Just because you have ms it doesn’t necessarily mean anyone else in the family will get it, but it is very distressing when they develop symptoms. Good luck and fingers crossed its nothing major.

Cath x

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Hi snowqueen it’s good to hear you have a chance of trrarment and I’d say your going the right way about it with the lemtrada option

yea there are risks but not risks that can be managed and remember thos is a drug that has been used for 20 years plus in a far higher concentration, if it does what it says on the tin it could stop your fisease and give you time for the neuros to find other treatments

It’s great to hear it really is, there’s a lot of people who have been blogging about their lemtrada treatments which might be worth reading, incl a woman from Msshift called Tracy, she’s a lovely woman and really helpful

Thank you Cath,

I feel so positive that I have this treatment option, it was overshadowed by worry that my sister might have this disease too but at least she’s been referred quickly.

I didn’t know whether to mention my news about treatment on this page or not as I know lots of people here would probably love to have this chance, however so many people on this page have helped me the last three months I wanted to share it.

Snowqueen x

They’re the same options I’ve been offered. I’m going to try the tecfidera route. Good luck

Sonia x

Hi Sonia,

Good luck to you too. Let me know how it goes.

Snowqueen x

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Hi Kris,

Thank you. I have cared for a couple of Oncology patients receiving this treatment albeit for different reasons. I am happy with the information my MS Team have given me. At the moment I am wanting to go into this with an open mind so don’t want to read lots of other people’s experiences of this treatment one thing I am learning fast is what works for one person with MS might be another’s worst nightmare.

Snowqueen

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Hello SnowQueen

I don’t know as much as a lot of the people on here , but I hope it all goes well for you.

Michelle x

Pleased the antidepressants are helping, snow queen. Good luck with all the other possibilities, fingers firmly crossed for you!

Take care,

Nina x

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Oops, can you tell I was in a hurry the other day Yes, I’m glad you’re the same as me with the wobbly diagnosis, I even have a suspicion I may have the progressive relapsing one but who knows - I feel like DMD’s are at least a preventative measure so definitely worth trying. I can imagine how you’re feeling about being on a rollercoaster! I had my suspicions about the RRMS side of things anyway.

I started my blog because my emotions needed an outlet when it all changed & the trial came up. I also still come to this part of the forum before Everyday Living, as I feel like this is home for me.

Sonia x

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Hi Snowqueen, you seem to have a good team of neurologists who are prepared to give the treatment a go. I wish you the very best of luck with it.

I still have no firm diagnosis although if it is MS then it is not the usual presentation either. It is really weird that I did have an attack, got better and then got the fatigueable foot drop nearly a year after the initial attack. There have been a couple of blips when I felt terrible and new symptoms have come and gone yet te neuro says I dont have relapses. He says the scan does not show I have relapses.

How is your foot drop ? Does it still only flair up after you have been out for a long walk ?

Moyna xxx

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Thank you Michelle

Snowqueen x

Thank You Nina. It’s also helped a lot being able to talk to people who I know truely understand.

Snowqueen x

Hi Moyna,

I truly consider myself lucky to have the MS Team I have especially when I read the experiences of others here.

Sorry you are are still without a diagnosis. I realise from contact with both you and Kris P I didn’t word my first post right my presentation and diagnosis were 100% typical for MS hence why they confirmed MS so quickly. The thing that is not clear is what the phenotype for my MS is. Initially it looked progressive (slowly deteriorating mobility) but with hindsight I had a probable relapse in 2011 and my symptoms changed in March and I felt poorly which my team feel was a probable relapse, non of my symptoms have gone but they vary in severity day to day. Hence the offer of aggressive treatment and thought I may be RRMS.

With regards to my foot drop it is fatiguable still but I wouldn’t say after a long walk. I have been given a Boxia AFO to wear all the time which means on shorter walks I don’t need my walking stick however if I walk a longer walk I start struggling despite the AFO and need my walking stick. I am having weekly Physio too.

Snowqueen x

Thankyou Snowqueen,

​You are very lucky with the weekly physio. I have had 4 physio sessions since this 2011 !

My problem is they just dont know what box to put me in so I have been forgotten about entirely. I have been discharged from the NHS (consultant neuro and physio) but if I feel bad I go to a private neuro and get my baclofen increased.

I feel that I am self treating myself (biotin etc). I have also self referred myself to the FES centre in Salisbury and I attend at the end of this month. This treatment is going to set me back about £2000 I reckon.

I am seeing a thyroid consultant next week as I have issues with that. In some way I hope he will be able to get me back into the NHS neuro system hopefully with a different team.

Moyna xxx

So pleased you have a great team Snowqueen.

I actually think that the Barts Blog which said that people with PPMS may have had very mild RRMS and only realise there’s a problem when it becomes progressive. I certainly think that’s true of me as had so many years of mild symptoms.

Hope it all goes well for you,

Pat xx

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Moyna,

Thank you, you have been so kind to me since I first started visiting this site. I really hope you get answers soon. With regards to getting back into NHS Treatment via a Neurologist can your GP not refer you? Equally surely for FES/ Physio your GP can refer you I’m sure even without a diagnosis you would qualify for treatment to manage symptoms.

Pat,

Thank you for your message I am so grateful of the support I get from this site and people who understand.

Snowqueen x

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Hi Snow Leopard

I am newly diagnosed (2 weeks ago out of tbe blue) RRMS

When I read your comments bells started ringing loudly. Can you elaborate or point me in the direction of more info on this please x

Thanks Snowqueen,

​My consultant on the NHS got annoyed with me for going back to original private neuro. I was really going to see them both as neither were saying the same thing. I reckoned one was probably right but as I didnt know which I hung on to both. It didnt really make any difference as I wasnt on any treatment for whatever I had anyway. I was just wanting answers !