newly diagnosed and not coping well...

New diagnosis and before diagnosis
1

Hi, im new to these forums -actually this is my first ever post!!

I got diagnosed in july 2011 with MS. In 2008 i got diagnosed with demylination but when the numbness returned in 2010 it was more agressive. I’d collapse in the street, fall down stairs, bump into anything (i’d pinball down a corridoor bumping from wall to wall), i couldnt even grab anything as i would drop it, i was covered in cuts, bruises and scars especially on my legs. All of this lasted till august 2011 which was when i was put on Medrone for 5 days -i cant believe how much its changed my life!! my balance had improved like it was before i got the demylination. my doctors told me to take a d3 vitamin tablet -i take 4 a day in the winter and 3 a day in the summer. Before i took the Medrone my life was hell. i had no life, i’d stay at home and wouldnt go out. going to work was horrible -how can you explain the numbness and bad balance to people? i had good and bad days like some days the numbness wouldnt be as bad and i’d be able to do things and on the bad days i wouldnt be able to get out of bed cos if i did i’d fall as soon as i got out of bed. its horrible. i had to suffer for 10 months before they put me on Medrone which im seriously not happy about. even for my birthday i couldnt do anything!!

I had to tell my manager in work (which i didnt want to do) because its embarrassing. i told my manager that i need to go the toilet as soon as i need it otherwise it’ll give me a UTI which people with MS are prone to have as the bladder doesnt empty properly. I also had to explain to my manager that the nerves and muscles dont work together in a way. before i was diagnosed last year id had 6 water UTI’s in 2 months!! when i have a UTI i relapse and my bad balance and sometimes numbness returns :frowning:

So somethng happened in work the other day (MS related) and as of now im so down and crying all the time, i really dont know what to do. Ive got another UTI which now has me on strong antibiotics for 7 days. so today i rang the MS nurses up to see if they could give me any advice but they havent gotten back in touch with me as of now, ive booked a dr’s appointment for monday to talk about going on anti-biotics for 3 months to stop me getting UTI’s. im going to make an appointment with neurosupport so they can give me advice on how to deal with work.

Since i got told i had MS ive changed my life -how i eat, i exercise more -i even bought a wii fit plus which has helped alot! ive changed everything.

I have only told 5 people that i have it, i cant tell anyone or talk about it as i just cry. even typing this im crying.

Im a very positive person, i dont even think i have MS until something happens that reminds me that i have it like a UTI. when im down (like i am now) i have all these horrible thoughts like i’ll never be able to have kids or a relationship cos no one is gonna wanna be with anyone who’s like this and i know this isnt the way to think. i never think like that until im down due to my MS. i hate being like this, i dont like being negative or being around negative people.

I really don’t know what to do anymore, im really upset!

2

Hello, and welcome to the site

(((((hugs))))) because it sounds like you need some :frowning:

Getting your head around the diagnosis is not something that is quick or easy. In the early days I think all of us spend a lot of time crying, screaming, biting people’s heads off, etc - it’s absolutely normal to behave like that! The good news is that the vast majority of us get through it OK - it can take a while, but somehow we get our heads round it, accept it, and move on; get on with our lives. And you will be able to do that - there will be relationships, there may well be marriage and kids, there will be holidays and parties and new homes, jobs and friends, there will be ups and downs, and there will still be fun.

MS brings challenges that all of us would prefer not to have, but it is NOT the end of the world. It is still perfectly possible to live a long, happy and fulfilled life. Promise.

Now to practical matters…

I think you need to see someone who specialises in continence. There are meds and equipment to help MSers who struggle with urgency/frequency/retention/continence. If you get help, you may well be able to prevent the UTIs. You should certainly be able to reduce the number you get. The MS nurse or GP can refer you, but I think many centres are self referral, so you can just call and make an appointment.

It’s great that you are looking after yourself in terms of diet and exercise, but I’m a bit concerned by you saying that you’ve changed everything. Please make sure to not change so much that you’re not having fun any more. It’s important to get the right balance.

Please consider telling more people. Bottling it up is just going to add to the difficulty in dealing with the diagnosis. If there isn’t anyone that you feel comfortable opening up to, you could see a counsellor. I saw one when I was newly diagnosed and it helped me massively. It was such a relief to be able to tell someone everything without scaring them half to death(!) and to know that, no matter what I said, they wouldn’t judge me for it.

I don’t know what happened at work, but hold your head up high when you go back in. It is not your fault. I’ll say that again because it’s really important. It is not your fault. MS makes our bodies do weird and sometimes unpleasant things. It doesn’t change who you are - you are more than just your body! If what happened was public, and it’s unlikely to blow over quickly, then consider telling people that you have MS. Having a medical explanation will make most people go, “Ah! That explains it!” and promptly forget about it. Some people might be interested and want to know more (refer them to the website if you don’t want to talk about it). Some people might start being a bit too helpful. But most people won’t give two hoots. Especially if you shrug it off like “bit of a b****r, but sometimes life sucks. Now when was the deadline for…”

Hang in there. I know it’s tough, but it gets easier. Give yourself time.

Karen x

3

hi

just wanted to say welcome and im sorry you’re feeling low at the minute but you’re definitely in the right place

this is the best place ever for support and help so you never need to feel alone

im undiagnosed as yet but i do understand some of what you’re feeling.

there are days when all you want to do is cry and thats ok as long as you know when to ask for help, you dont want depression to come up and bite you on the bum as well as everything else you’ve got to deal with.

i really hope things settle down for you and you start to feel a bit brighter very soon.

sending you lots of best wishes

mandy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

4

Hi ya and welcome to the site

It’s a really big thing being told we have ms. I took the news fairly well initially…but that didn’t last long because within weeks the reality of it set in and to be honest I didn’t know which way to turn. I was devastated. By nature I’m a chirpy sunny kind of person - one of the half glass full brigade rather than a half glass empty - so it was unusual for me to feel like this. But gradually things improved and I started to get my head around stuff. Acceptance doesn’t necessarily always come easy and I think up to a point we have to go through the motions to get there. But we do get there.

Without doubt everyone here on this site has been a major help to me - I first appeared a few years back prior to my diagnosis. My GP recommended having a look at the forums and he couldn’t have given me better advice. Knowing there are others around who know exactly how you feel and what you’re going through makes a huge difference. A listening ear and a few words can go a long way!

I still work full time, my bosses and colleagues all know I have ms - I’d already been working there a couple of years before I was diagnosed and in a sense they went through the diagnostic stage with me. You’re not obligated to tell your employer that you have ms but if they aren’t made aware then they’re not in a position to understand or to make any changes that in turn may benefit you. I think the same thing applies with friends and family really, everyone that I know, knows I have ms. Whilst I’ve not shouted it from the rooftops I chose to tell those closest to me. I consider them all as part of my support network. Obviously telling people is down to personal choice. Some do some don’t. Do what’s right for you.

I’ve made changes to my life too but I’ve done it gradually rather than in one hit. I still enjoy my life, in fact it’s made me look at my priorities too so in many ways I’m happier. I’m still the same person though - it’s my situation that’s changed and I often make little adjustments here and there depending on how I feel.

There’s all sorts of services and support available too - have a look around this website (if you’ve not already) you can download or order various publications that are useful, ranging from information on ms itself to things like work issues. The ms trust is another good one - stick to the official websites though, the internet is a wonderful thing but it can also be the complete reverse…

Both my neuro and ms nurse have recommended that I make an appt to see a continence advisor - I think I will. At the end of the day anything that has the potential to help is worth trying in my eyes.

I hope that you’re starting to feel a little better about things - it can take a while so don’t beat yourself up over it but do make sure that you’re doing the right thing by you.Take your time getting your head round things and gradually things will improve.

Good luck

Debbie xx

5

Thankyou Karen, Mandy and Debbie for replying and being very helpful and positive

When i first got told i was fine with it, i had a smile on my face and knew i wouldnt let it beat me, i myself am a glass half full person and im always postitve but then when you have bad days like horrible balance, it takes you ages to grasp things thats when the negativeness creeps in and tries to steal your positive light.

I have a very big family and have only told 5 people in it and 2 of them are my parents. I don’t talk about it as i get upset sometimes. When i told 2 of my friends one went weird and distant for a bit while the other didn’t change.

I made an appointment with the continence advisor and i have that soon. I’ve been put on anti-biotic tablets to keep the UTI’s away, and since i’ve been on them i feel so much better. Im on them for a few months and then change to different ones so my body doesnt get use to then - 2 things im very grateful is my dr who knows what its like to have it (his sister has it) and my neurologist who is absolutley lovely! I went for my appointment with him the other week and he said he wants to see me next year!! He’s happy that i feel good and positive and that i’ve changed my diet and life.

When i said i’ve changed things i meant my diet and excercise and things -i have pasta about 2-3 times a week, red meat, oily fish; its mainly mediterranean. I’ve lost weight and toned up using the wii fit and i do yoga everyday which i think has helped.

I want a new job and i’ve been looking yet i think because i’ve got MS that will go against me -and this is where the negative thoughts come in.

I saw the MS nurse a few weeks ago and she was no help, i don’t even know why i had an appointment with her. She said until i’ve seen the continence people she can’t do or say anything. I have an appointment with my 3rd dr (who i’ve never met) in march.

I dont really go out that much anymore. It depends on my legs shaking cos if i did go out and stood up and my legs start shaking i’d feel so embarrassed especially infront of my friends but when they don’t shake i do go out.

Im great i’d say 8-9 out of 10 times, its just when i have a set back like sciattica or when my legs spasm -and lately thats been alot- that i have bad days.

As for the relationships about it cos its not fair on someone else.

Im really trying to not let it ruin my life.

Thankyou for replying and letting me vent x

6

Are you on anything for the spasms? Baclofen can be very effective, and your GP can prescribe it.

Did you know that you don’t have to tell an employer about your MS? In fact, apart from a few jobs that are excluded, interviewers aren’t even allowed to ask you about your health since the Equality Act was passed. So, go find yourself a new job, and keep quiet about the MS!

Some people can be a bit weird when someone they knows gets ill. The ones who don’t stick around clearly aren’t worth it, so don’t lose any sleep over them at all! If you can get your meds sorted re the spasms, you need to get yourself back out there again and have some fun, maybe someone will come along who wants to be with you with or without the MS - it does happen you know!

Karen x

7

Im on Baclofen for my leg spasms but i dont think there working, my leg spasms have reduced alot but lately i’be been getting more. My Neurologist told me about it, i’ve been on them since round about May last year.

i had to tell work cos when i couldnt walk i had to ring in sick and when you ring up sick where i work they ring you back and ask you lots of questions. Thankyou for that advice, im always looking for a new job, nothings come up yet though but i’ll keep looking.

I know, im a keep things to myself person and don’t like loads of people knowing my business. People who stick around definatley not worth my time or effort! Im still struggling with the idea of being in a relationship with someone only for the fact of having to tell them i have MS.

Im thinking of phoning the MS nurse up and telling her about my leg stiffness.

What do you think? x

8

Ruthie12 - When i got my MRI results it showed i had 2 spots on my brain, these were at first classed as Dehmylination (i think thats how its spelt) but my 2nd scan, 4 years later, my Neurologist said its MS and he sent me to an MS specialist.

My advice would be that its ok to cry, everyone has good and bad days. Everyone’s MS is different. Somedays you’ll be fine and positive and the next you’ll be crying or frustrated and have negative thoughts and thats fine cos it happens to everyone. Write down questions that you wanna ask the next specialist you see.

I hope that helps

9

Mine said they could do a lumbar puncture but i said no. A 2-3 month wait for a lumbar puncture?

I had to wait a few months to go and see the Specialist.

I got diagnosed by my Neurologist in May 2011, i went to see the Specialist in July/August 2011. My numbness started in Oct/Nov 2010, my balance use to go all the time, i’d fall down in the street, down the stairs and even when talking to people i’d fall. I’d pinball from side to side, i’d bump into walls -it felt like i was a magnet to anything around me even if i wasnt close to it. My legs had bruises and cuts all over them. My balance was really bad, and even my head use to angle to the side for some weird reason. I’d get tingling/pins and needles in my feet and hands. My legs use to and still do shake but not as much as they did since i got put on Baclofen.

One of the worst things about MS (apart from having it) is being sleep deprived. You need sleep for your cognitive development.

I hope your ok.

10

Hi Ruthie, and welcome to the site

Well hearing the words “multiple sclerosis” without any inkling they’re coming is enough to put anyone in shock and forget to ask questions! Even those of us who are well prepared often forget at least one thing (me included :-)).

There are fixed criteria for being diagnosed with MS: “dissemination in time” and “dissemination in space”. These basically mean more than one attack and more than one part of the body affected (e.g. eyes and legs). If someone doesn’t quite meet either of them, they get diagnosed with Clinically Isolated Syndrome (CIS). If they meet one properly but not the other one, it’s “probable MS”. If they meet both, it’s MS. [There are slightly different criteria for primary progressive MS, where people don’t have attacks (aka relapses); instead their symptoms gradually get worse over time.]

Not everyone who has CIS gets MS. Same goes for people with probable MS, but the chances are higher.

In the UK, the only people who get access to “disease modifying drugs” (DMDs) are those with full MS that is not the primary progressive type. There are criteria to get onto them which include having two significant relapses in two years. DMDs reduce the number of relapses that people get and help to reduce the severity of the ones that they still have. There are loads of meds & therapies to help with symptoms that are available to everyone though.

I can’t really tell you what happens next as it depends on your neuro’s thinking. I guess that will become clearer once you get a letter from him/her. Try not to panic though, and please don’t go reading all sorts of stuff on the internet. MS is an incredibly variable disease. No one gets every symptom, and even the ones that we do get can vary massively in severity. The majority of MSers never use a wheelchair. The vast majority of MSers can live long, happy and fulfilled lives. MS is not the end of the world! Promise!

This site is brilliant for getting support and advice. So fire away if you want to know more (Best to start a new post, so that everyone can see that you’re new - they might miss it in here.)

Karen x