Forum

treatment ?

hello everyone im new to this and just getting used to the site

my husband has been diagnised with secondary progressive MS last month, for 10 years he hasnt had treatment as never been diagnised until now, He still has not been given any treatment, we have an appointment tuesday for that we hope, He suffers with severe headaches constantly and other symptoms.

Can anyone tell me What your treatment is and how it has helped you?

Thanks x

Hi Christine.

So glad you managed to post. It was good to talk to you by PM. Hope you get lots of help and reassurance using the forum like I explained to you last night.

Good for you for working out how to post!!

Shazzie xx

Hi Christine, my your`s is a popular christian name! I have a carer called that and a neighbour and a sister who is also another carer!

Anyroad, welcome to the site and I hope you find what you need here, in the way of support, advice and friendship too. You may even have a titter from the odd joke or two! i`ve been a member around 3+ years and have made some really good buddies.

I dont have MS, but a similar debilitating condition.

So, you`ve got this appointment next week and I hope it will be a good one.

Whenever I go to see a neuro, I make a brief list of symptoms and questions.

You say your hubby has only recently got his diagnosis…was he having tests for 10 years then? Hopefully, he will be offered some helpful medication.

I was a long time in limbo-land and still am in a way. I feel like I have been passed from pillar to post. It takes a lot of dealing with and gets us down.

Keep coming here to chat with us and we`ll do our best to support your family.

luv Pollyxxx

Just bumping you back to the top as I know you are new to the site.

Shazzie x

Hi Christine, welcome to this lovely bunch of people, who are so on your side, and your never alone. I was extremely troubled when I was diagnosed, my way of coping was to shut it out, it came one day and smacked me in the face, I was so so unhappy, why me? Nasrty to my my family, badically a self obsessed pig! But the people on here made me feel, I’m not alone, there is help, and I must say I’m coping and very happy now (although I’d rather not have it) thanks to these lovely people, Don;t ever be afraid to ask/chat about anything (even the embarresing stuff) someone here has been and done it already. I wish you and your family the best, please anything you want to talk about, just ask xxxxx

Hi Christine and welcome to the site - I don’t know where I’d have been without the support, experience and knowledge of the people here during the last few months.

I guess your life has probably been pretty difficult if your husband has only just been diagnosed after 10 years… it seems that a lot of the time MS is really difficult to diagnose - my personal experience has been the other way round, so it’s been a really tough few months going from having a bit of difficulty walking at times, to being told I’m likely to have primary progressive ms.

That’s why I don’t know too much about treatment to be honest. There is an article on the site about new trials that are going on for secondary progressive, so that’s probably worth a read - I hope Tuesday brings some answers in the shorter term tho.

I have seen 2 GPs at my surgery since I was diagnosed and I have to say they were both immensely kind and helpful to me in lots of ways, I hope you’ll find your surgery is also helpful.

I hope you find the forum as friendly and helpful as I have, MS truly does make you feel like the rug’s been pulled from under your feet (quite literally with some of the weird symptoms we get!)

Sonia x

Hi Christine and welcome. Can’t shed too much light on things other than what Sonia mentioned about the information on the site about the trials. It’s worth speaking to the neurologist on the next appointment to see if your hubby can get any DMD’s or even if he can go on a trial (if that’s something that you both think may be a good thing). They are doing trials on gilenya and tysabri on secondary progressive ms patients at some London hospitals - notice you’re in Essex from your profile and they may well be doing trials at your local hospitals. From what I’ve read so far the trials seem to be showing positive news. I think that there was a post on here about a week ago from someone that has second progressive ms and is on gilenya or tysabri (can’t remember which one). Hopefully someone will remember the thread or will remember the details. Karina x

Hi, and welcome,

I have been diagnosed for 4 years but have had problems for a lot longer. I am unable to walk more than a few metres and only with sticks or crutches. I can still drive and have dropped down to two days working a week. Because of more than one downturn in a few months I have been put onto Avonex which hopefully will lessen the attacks. I have self injected this evening for the second time.

My first experience of treatment was steroids which slightly reversed the downturn, this I had twice before the Avonex was prescribed.

This has been my timescale of events, so as you can see these things take time. Have you reported these symptoms to the Neurologist.

Hope you get this resolved quickly.

Tony

http://www.mssociety.org.uk/ms-news/2012/10/potential-treatment-found-secondary-progressive-ms Hopefully the link will work - it’s the research on the treatment trial for secondary progressive

hi christine

its a difficult time for you and your husband.

we all have different coping mechanisms.

mine is to make light of it, make fun of myself and make as many wise cracks as possible.

but i can get touchy if a family member says the same things to me.

i recommend that you both go to your nearest ms therapy centre. they are great places full of msers and carers of all ages and almost everyone is cheerful.

the therapies on offer include hyperbarric oxygen treatment which is quite effective.

good luck, it won’t always be this bad

carole x

Hi Christine

Just wanted to say hope you and your hubby have a good appt with Neuro on Tuesday.

You should be introduced to an MS Nurse. My MS Nurse can be contacted by email or telephone. She is always really helpful and knowledgable. I am sure your hubby’s will be too. Fingers crossed eh?

Shazzie xx