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Very upset and struggling

Hi, my name is Sophie and I got diagnosed with MS in May 2014.

I got rushed into hospital after collapsing at work. Previously only having a numb and tingling arm. So as you can imagine after my first MRI I was so shocked to hear I had MS. I then got discharged from hospital 4days later with a supply of steroids and I have had no support. I had no one to call, no one to ask what it’s all about. In some respects it’s wrong that I had to research it on google by myself. Thankfully I have found this site.

Anyway I’ll cut a long story short, on for the last two months i have been signed off work but I have progressively got worse. I kept getting horrible cramp, severe fatigue - some days I would sleep all day even after having a full nights sleep. My head aches have never left me. And some days it was a real struggle to walk.

On Wednesday I had my first neurology appointment and they have asked for me to go for a lumber puncture, and further mri’s with contrast as I am loosing sight in my left eye. So they can 100% say it’s MS. (Which I thought I’d already been diagnosed) It’s making me very nervous and upset, depressed and worried. I hate needles and I now need to have these procedures. Along with also being told I may need to have medication which involves injecting into my stomache.

I went back to work for a trial on reduced hours, I didn’t even last 3 days and I’m back home now feeling terrible. Not to even mention my worry on money and how I am going to afford living on SSP. :frowning:

I would appreciate it if someone could tell me if I am worrying for no reason, but I’ve read so much and I’m now thinking I won’t be able to work at my job. It would be too stressful. I need some sort of light at the end surely. I’m finding coping with this so hard.

Thank you

Sophie

Hi Sophie

I am sorry you are having such a difficult time at the moment. This initial phase really is the worst time with MS until things settle down and you know more about what you are dealing with.

MS is a hugely variable and unpredictable disease and anything is possible with it. It is perfectly possible that, if this is a relapse, you will recover completely from it and then never have another relapse. Unfortunately there is no way of knowing what your path will be. Many people with MS lead perfectly normal lives.

The future is certainly brighter for people with MS now than it was 5 years ago. New treatments are being developed and trialed all the time. Certainly drugs which are taken orally (i.e. not injected) are just coming onto the market.

This is a very scary and frightening time, especially as you seem to have no supprt from the medical profession, but it will get better. If you think it might help you can ask your GP to refer you for counselling or you can give the MS Society help line a ring on 0800 800 8000.

Hang on in there.

Good Luck

Anne

Thank you very much Anne, a very informative and calming reply. :slight_smile: x

1 Like

Hi Sophie

Welcome to the forum, and I am so sorry that you were left to your own devices, good job you had initiative and found this site.

Ms is very unpredictable and varies from person to person, so it is really difficult to know exactly what course it will take, but by finding this site someone will have the answer to any questions you have, and I suspect you will have loads, so ask away.

The reason the neuro wants you to have another MRI, is cos the McDonald criteria (which neuros follow) says to diagnose ms, you should have 2 episodes, and the MRI will give more idea. With regard to the lumbar puncture, firstly you can choose not to have it, if that is what you want. It probably would mean diagnosis will take longer, but it is your choice.

There has been lots happen in the treatment of ms in the last years, and if you turn out to have relapsing remitting ms, and you meet the criteria, you maybe offered DMD’s (disease modifying drugs) to help reduce progression. In the meantime ask if you can be referred to an ms nurse, as they will be able to offer advice, and also your gp can prescribe medication to help with symptoms you may have.

Hang in there Sophie, it will get easier.

Pam x

Thank you to both of you for your kind words and prompt reply. I appreciate it xx

Hi

It wouldn’t surprise me if the stress & trauma of the newness of it all was contributing to things being so hard, so you might find it helpful to do some form of meditation like mindfulness, to help with things like anxiety. You’re going through a lot, so you need to take care of yourself.

Regarding work, I recommed getting in touch with Access to Work. It’s a DWP thing to help people like us to stay in work. Although it may be too soon to try & return to work now, hopefully when things settle down you’ll feel able to try again, and Access to Work could really help. They can do things like provide equipment, or help with travel costs (I use them to pay for a taxi to & from work).

Also, apply for Personal Independent Payment (formerly Disability Living Allowance). It’ll probably take a while to get an assesment, and you’ll probably want to appeal against their decision, but it will help with money. And if you get it then you’ll be able to get working tax credits too.

Hope that helps.

Dan

Hi sophie

I cant offer any advice im affraid as even though ive had it for 14yrs i didnt get a dx until this year after i went blind in my left eye as the name had changed throughout the years but hang in there and i hope something gets brighter for you asap

respect sheep

What a shame for you. Keeping calm will help you, (if you’re able to) as anxiety and stress can make all the symptoms feel worse. Do you have an appointment with an MS nurse? They can support you and have got lots of experience supporting people, not only with the medical side that the neurologist looks at, but also with the practical side of things too. Where do you live, as services are different across the UK. There are also some really helpful people in these forums too who can help you get through one day at a time. Good luck and keep talking to people on the forums, you’re not alone, and you’re not alone feeling like you do… Honest!

Hi, You don’t have to have the lumber pucture if you don’t want to. You can also request DMT’s (injectables and may be also tablets) if you are diagnosed as CIS or possible MS from what I have read. It’s your choice after weighing up every thing.

Regarding the medication (DMT) for diagnosed definate MS patients. There is now an alternative to them being injected into your stomach, there are two new oral tablet drugs now available on the NHS. The tablet is taken twice a day. These are first line therapy and are named BG12 and Aubagio. BG12 will be prescribed by neurologists end of October/ start of November this year. The BG12 is supposed to have around 50% reduced relapse rate compared to the injectables which are around 30% reduced relapse rate.

Good luck.

Hello I hope you called the MS helpline and they pointed you in the right direction. Sorry to hear you’ve has such a rough time.

Hi Sophie

As others have suggested- you should call the Free MS Helpline 0808 800 8000

Also you may find this page on ‘Benefits, work and Money’ useful:

http://www.mssociety.org.uk/ms-support/practical-and-financial-help/work-and-money

Best wishes

Stewart (admin)

hi sophie

i think this initial stage is the worst (i hope).

once you have accepted it there are things you can do to make life better.

as sheep said mindfulness meditation is excellent.

also going to a ms therapy centre is a good move.

they offer Hyper Barric Oxygen Therapy which makes you feel better and certainly makes sure you have a good night’s sleep.

also a friendly bunch of all ages.

one big thing for me was changing my priorities and allowing my life to slow down.

with your diagnosis comes certain things

  • if you drive you must let your insurance know or it will not be valid

  • at work you have the protection of the disability discrimination act.

take your time love and rest as much as you need to.

much love and concern

carole x

Hi Sophie

I can remember the panic and fear that I had on being told my possible diagnosis over 30 years ago - I really do feel for you, it is a horrible experience and a huge shock. In those days I found a book (the only one!) in the library, which comforted me a tiny bit - nothing like the support you will/have received here, and the far greater knowledge, easily available now. If it helps to know, I have raised a family, had a career and in fact returned to full time work a few years ago in a completely new role, and there are many more MSers out there who’ve done the same.

I wanted to mention to you that with an official diagnosis, you are protected by the Equality Act - so please research how you are protected before making any major life changes. I wish you all the very best and hope that the anxiety is starting to subside, as I am sure it will.

Best wishes

B x

Hi Sophie - I remember feeling just the same as you. I was diagnosed in less than a day and the diagnosis was later confirmed with the lumbar puncture - please do post on here before you have it. Many people have invaluable advice on how to avoid the possible after effects.

I started on Rebif, which is one of the older injectibles. It’s only a subcutaneous injection and not ‘into’ your stomach, but just under the skin. It’s worked well for me, but it’s been 14 years now and I’d like to change to one of the newer drugs.

You feel so frightened and alone, I know. Take a little comfort in the fact that your neuro is doing further tests. He or she sounds like they know about MS and what to look for.

Forums (forae?) are the very best place to ask questions and make friends. I have received great support and help from this forum. Nearly everyone here actually has MS and so do the Mods. It is a good and safe place to post. You’ll find more people here on treatments, drug regimes and who have needed help with support with the forms for PIP (if you need it).

I hope you feel a bit better soon - we’re here for you.

hugs,

K

Hi Sophie

others have explained diagnosis procedure enough so I hope it’s clear to you.

However I wanted to add that refusing a lumbar puncture will not delay your dx since you are having an MRI and lumbar punctures are used much less frequently now we have routine MRI scans. I refused one 27 years ago and was dx solely on my symptoms and clinical exam.

i definitely wouldn’t have one nowadays - I know enough to know there’s no need to put yourself through that.

The contrast MRI should confirm absolutely and they may start you on DMDs. Some do involve injecting but it’s not too scarey with the pens to administer. Also there are now new meds, NICE approved and a couple are oral tablets that you may qualify for.

check out this site under Support and you’ll find a section on licensed and off licence drugs.

someone gave you the MSS helpline number but one number was wrong - it’s 0808 800 8000.

this stage is difficult and stressful Sophie, it will get easier

Susi x

anyone in your situation would be worried sick.

Re Lumbar Puncture - that is decision for you and your doctor.

Re Work - don’t do anything drastic - don’t be pressurised into resigning or reducing hours.

You need personal support from someone. This may not come automatically - you may have to actually ask some person(s) directly.

Hi Sophie

like you I was diagnosed in May , i had my taxi licence taken away the same day although they believe I have had MS for 14 years , the DVLA also have taken my driving license away due to really bad vision and balance , so with no income I went contacted a local help group who gave me a number for the MS nurse who I called , she came round to my house 2 days later and although she hadn’t yet received the referral from my neuro , she has been a rock , this disease isn’t just effecting me it effects the whole family , I am shocked that since the first major incident in May how quickly everything is going wrong , physically and financially , my wife is finding I very frustrating that I can sleep all night , get up and then sleep on the settee all day but I can’t help that .i think the fatique is the worst thing so far, I can manage the weak left leg and arm and the lack of clear vision but the fatique is really bloody depressing. My GP is great , I tell him what I need and he gives it ( can’t get red wine on NHS oes though ) we went to the CAB today to find out about going bankrupt but can’t afford to do it , they can’t have what I ain’t got , luckaly we live in social housing so are luckier than some , I have also refused a lumber puncture , very needle phobic !!! We have an appointment at the end of the month to train us to self inject, will have to be overly nice to the wife now as don’t want her injecting me on a bad day lol. All I can say really is stay as happy as possible as you can and enjoy every day as much as you can ( the odd drink does help ) you are loved by many who may find it as hard as you at times xx GOOD LUCK

Hi Sophie, I can see that you wrote this msg in July. I hope the things are much better for you now.

I’m very knew to this site, just found it today. Actually, I’m very knew to England too. We moved here from Canada a week ego.

I was diagnosed with MS in 2008, as I lost the site in my right eye. When I was diagnosed, I didn’t get the news very well. The doctors

wanted to put me on steroids (side effect depression), and I decide to decline.

Luckily, my hubby Joe found this Website about MS and medication called LDN was poping out to his sight, every time he was searching

further. I am on this medication since and I feel relatively good. During those 6years I had only 3 mild relapses (num hand and arm), but it

it has always disappeared.

I don’t know how are you feeling now, I just wanted to say hi, and maybe you want to check the LDN online.

wish you all the best

Diana :slight_smile:

Hi Sophie - and everyone else. I have just joined the forum, and read this post (working my way through them all). I just wanted to ask you how you are doing?

I was diagnosed in January 2013 at the age of 55 and it was a nightmare. Having two grown children and one grandson (6 months old at that time) didnt help my worries. My husband was manic in his approach to looking after me, and I cant thank him enough.

Since then, I have more or less recovered. Except for chronic pins/needles/numbness in my hands and fingers. And there are times when I am so tired I just want to sleep. So we do all feel the way you described, at times anyway.

My neuro is not helpful, but he has prescribed all sorts for the pain, including Sativex. I buy LDN myself as this helps my muscle pain. And I have physio when I need it.

It is difficult to get to grips with the diagnosis without the annoyance of all the different symptoms, and no one having exactly the same as you.

My advice, Sophie, is to try to stay calm but to make sure you make a nuisance of yourself wherever you can to get what is due to you and to get what you need.

For moral support, then there are many people out there to help. I know I have used all sorts of forums, to get info and support. My favourite (apart from this one :)) is Shift.ms. They are good at spurring you on.

I do hope you are OK. Please let me know. Take care. Hugs. x

Hi Sophie,

I keep an eye out for things that could help ms as my sister has it.

Recently on tv I saw a professor of medicine who had devised an alternative diet based treatment for her ms.

I think I can fairly say that she ‘had’ ms rather than ‘has’ ms!

You could go to you tube and type in ‘how I went from wheelchair to walking by changing my diet:dr terry wahls’.

I think it looks amazing.