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Finally!

I have finally received my official diagnosis and can now say I have MS. What a rollercoaster this last 12 months have been even more so the last 6 months. One test after another but all needed.

I have been experiencing symptoms for the last 4 years so I believe I have had it since then, my first major relapse in November 2017 started off the doctors appointments with my first scan in February 2018.

A new way of life starts today, I am due to start Copaxone in a few weeks, my choice, entirely chosen for the lack of potential side effects as I am still working and enjoy working and want to carry on for as long as possible.

The MS team at Salford Royal have been nothing short of amazing.

Good luck to you all going through the diagnosis period.

Mel xx

Oh Mel, I am so sorry you have been diagnosed with MS, I expect even though you’ve suspected it, its still a shock to finally have it confirmed. I keep telling myself if I do get diagnosed, then theres nothing I can do to change it and will have to just get on with it, maybe its denial as I imagine that I will be upset and scared if that is the case.

I really do wish you all the best and thank you for the support you have given me.

Take care

Louise x

Hi Louise

Thanks for your reply, it was entirely expected. The results and diagnosis were near enough sent by letter last week. The first thing the doc said to me was “I apologise for writing to you and not seeing you in person” followed by have you looked at treatment options and what is your preferred choice!

To be honest having the results before the appt was better for me as I had got a lot of emotion out of the way and was ready emotionally for Fridays visit.

He thinks my spine has more damage than originally thought and although their are a few areas on my brain scan, he thinks it looks ok and the aim with treatment is to keep it that way. Don’t see him now for a year unless there are problems, my MS nurse is my first point of contact.

I opted for Copaxone daily jabs and a lesson with the nurse is next when they arrive. I work, enjoy working and want to continue so this was the best option due to minimal side effects.

It is such a lot to take in and digest, whilst waiting in clinic there was one lady prob about 15 years older than me walking with crutches and a big happy smile on her face. She will never know but she made me feel really positive for the future.

Its a new way of living now! I have said to you before you cannot be in better hands than the MS team at Salford. Please keep me posted how you are getting on.

Mel xx

Hi Mel,

Your reply made me want to give you a big hug, sorry if thats a bit OTT but it is such a worrying time and I honestly just felt I wanted to do

Gosh, Im not sure how I’d feel about being told by letter but then I agree it gives time to digest and hopefully get your head around it a bit before the appointment. A letter came through the door the other day, less than a week after my MRI and the Hubby and I both thought it was from the hospital, I admit I was scared as it would have been so quick. I really must stop using that word (scared) but its how Ive been feeling, anyway it wasnt, so Im just trying to put it to the back of my mind again for now.

I will never forget my first appointment at Salford Royal, we were sat in the waiting room and there were people in wheelchairs and on crutches, I walked into the consultants room in a daze, felt lightheaded, probably babbled nonsense to the lovely consultant, it was all very surreal. Of course I don’t know if I have or haven’t got MS yet but the whole process really does give you a reality check.

Have you just been assigned an MS Nurse? Sorry for asking but Im early on in the process so don’t really know what to expect.

I really hope your ok and that Copazone works fantastic for you.

Sending hugs

Louise xx

When I went to see the neurologist I didn’t know why I was there. He spoke about MS three times and in the letter seems a bit puzzled by my answers. At long last I finally going to see him at the QMC on Wednesday at the end of the day, I will have to go on the bus then on the tram to get to the hospital but luckily the tram stops right out side of the hospital plus the traffic around the hospital is dreadful at that time of night so driving is a no no. Also I won’t be home until 6pm I think. I am sorry that you have been diagnosed, getting your head round it must suck, I don’t know what to expect in this visit but at least I will get my tests results and maybe just maybe find out what happens next or is it limbo for a few more months, years.

Are you going to tell your work place that you have MS or are you not telling anyone just yet. I think if you were looking for a job I wouldn’t tell them as you know that you wouldn’t get the job, that’s for sure.

I know that you have to let the DVLA and your insurer that you have MS, are there anybody else that you have to let them know?

I haven’t said very much to my brother he would look it up and then phone me up and tell me what I should do, my sister on the other hand has found out because a friend of hers has MS and told her some of my symptoms and when I told her she said I knew I knew it, so she knows.

I hope at least you know now what you have and can sort things out. Good luck.

Kay

Morning Louise

Im fine, it is such a lot to get your head round but Im getting there. I have a very supportive hubby and great kids. They are all teenagers now (16, 18 , 20) they have been quite upset about all this. I said to them on Friday, thats tears done now its time to move on, any question just ask me. I have been quite ‘matter a fact’ but thats just the way I am.

When I was first referred to Salford in May last year I was seeing a general neuro. He organised my first brain scan and after seeing me about those results he transferred me to an MS specialist. From that appt I was allocated an MS nurse, I was diagnosed with Clinical Isolated Syndrome at this point. My nurse has been amazing very down to earth and tells it as it is. I have seen her a couple of times and have had cause to ring the service twice (leave a message and they ring you back).

It seems as tho once diagnosed, the nurse takes over day to day management and neuro once a year unless further problems.

Nothing and no question no matter how daft you think it may be is off limits. i don’t go to Salford to see her, although they work out of Salford they run clinics in local hospitals. I am south Manchester so go to Withington.

can’t falut them. I to hope I get on ok with Copaxone, my hubby may have yo do a couple of injections in hard to reach areas (arms) not sure how he feels about that (lol!) but he is coming for the lesson!

My nurse also gave me loads of info about websites to look at and local support groups but I don’t think Im quite ready for support groups just yet will see how it goes.

Keep in touch

Mel x

PS thanks for the virtual hug, sending one back

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Morning Kay

Thanks for you kind words. I am fine, having a confirmed diagnosis is in some ways a relief. I can finally move on and away from limboland which was killing me as Im sure you know.

Yes my work place are aware and have been amazing. My immediate family know I have been quite up and down emotionally over the last few months so it seemed the right thing to tell them. A few people at work know, my close friends and the people I work closely with. I can’t bear being told I look well when most of the time I feel like rubbish, no one says that to me anymore!

I have spoken to DVLA, forms are on way. Until they arrive I just have to follow docs advice, although I believe I will still be ablt to drive but probably on a restricted licence (3 or 5 years) I think.

My car insures have been great, is noted on policy but no changes.

I am back at work tomorrow, I enjoy working and want to carry on as long as I can. I have two dogs and can’t do long walks like I used to partly because I get minor aches in my legs but mostly because ai get tired.

Tomorrow is a new week and a new way of living!

Take care and good luck with your appt.

Mel x

I hope the day goes well and you are note to tired. Kay

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Your more than welcome and thank you for the virtual hug back

I did smile at your hubby coming for the injection lesson, mine would be exactly the same, infact Im not sure I would fancy him giving me an injection inbetween him cringing doing it lol.

Awww so hope everything goes well for you. We are self employed, I do a manual job and have a horse and the thought of potentially losing that is quite scary, gosh Im typing that blooming word again!!

Please keep in touch and I wish you the very best

Take care

Louise xx

Morning Louise

Up and ready to start the day. Back to work for me this morning.

I have found some comfort and reassurance from this forum, but speaking to someone (you) who is being looked after by the same hospital and possibly by the same medics is even better and you know like I do and will get to know even more the Salford set up.

I’m really not sure about him doing the jabs either, but I have to jab in 7 different places and my arms may be hard to reach, we will see!! Cringe!

I have learn’t to take each day as it comes and not look into the future to much although that was all I did when this all kicked off. I enjoy working and want to carry on. The early they diagnose the more chance they have of keeping you well.

No need to stop the ‘scared’ word as it is scary (i’m doing it now!) stuff. But we are in the best hands. When is your next appointment?

Would love to keep in touch, have a good day x

Mel x

Hi Mel,

Hope today went well and you feel better having a bit of normality back in your life. I work with my hubby but I do often miss the girly chats when I worked in an office.

Im right at the beginning of the journey but felt like my world had come crashing down when MS was mentioned by my Doctor. I do feel like the future is on hold though until I know what Im dealing with and being self employed it is a bit scary (I used the word )

Im waiting to hear when my next appointment is, I will get the results of bloods and my head and full spine MRI so I am apprehensive. (scared )

Gosh 7 different injection sites! Im not needle phobic but Im not sure I’d like to inject myself. How often do you have to do it?

Its a small world isnt it, I came on this forum when MS was mentioned and I consulted Dr Google! Hes not all bad as he led me to here lol. I really appreciate the support you and others on here have given me. I may or may not have MS but people still take the time to help and support each other which I think is lovely.

Would love to keep in touch too

Take care

Louise x

Morning Louise

I have sent you a private message.

have a good day

Mel x

Hi Mel

I’m glad you’ve got the actual diagnosis bit out of the way and are dealing with it in an optimistic and positive way. Obviously, I’m sorry you’ve got blasted MS, but as you’ve explained over time, it was only a matter of joining the dots and having it confirmed.

I was on Copaxone for about 5 years. This was about 5 years following onset of MS symptoms. I worked damn hard in those days (and partied pretty hard too - part of the job I did really). Copaxone was an easy drug to take, I never had any significant side effects or injection site reactions. What you do have to try and do is to rotate your injection sites. But don’t worry too much if the arms are difficult, I was very thin back then and I hated doing my skinny arms. I concentrated on injecting my bum and thighs. My stomach could hurt a bit at times too (like I said, skinny city girl! I wish I still was!) But luckily I am more of a ‘pear’ than an ‘ apple’, so have more in the way of butt and thighs to inject.

What I used to do (I don’t know if this is a good thing or not), was to take a few days worth of injections to the bathroom and leave them there. Room temperature was better I always thought and straight after a shower, but before body lotion or anything was best. I also used to just inject rather than use an autoject device. I think it lessens the injection site reactions or bruises. I know it helps some people to not see the needle, but I wasn’t too bothered about a teeny little needle.

Just do what’s best for you.

Best of luck Mel, by all accounts, Salford Royal is an excellent place to get MS treatment!

Sue

Thanks Sue

Yes is was expected, but since receiving diagnosis I have had a couple of meltdowns, I suppose this is normal? Trying to get my head round everything.

Waiting for a delivery date for Copaxone. I have a terrific MS nurse who called me on Tuesday to let me know she was on to it and was getting the paperwork sorted. I really just want to start now. Im not squemish so should be ok with needles. Auto injector has not been mentioned I think they will be one dose needles. I have opted for daily ones,my neuro said this would be better to start off with and get me in a routine. A lesson with my nurse seems to be the next step.

Salford Royal really is a centre of excellence, not a place I want to be, but feel lucky to be surrounded by an excellent MS team.

Thanks for your advice re injections I really do appreciate it. I have had some great support from this forum and will continue to contribute.

thanks again

Mel x

Mel,

Don’t expect your mood to remain stable for some time. I was writing earlier like ‘oh it’s good to finally get the news you’ve been anticipating’. But you are fully entitled to a good period of ‘it’s not fair’, ‘why me’ and ‘aarrrghhh’. So cycling through all that is usual. MS is a crap diagnosis, no one would disagree with that. It doesn’t matter how long you’ve been looking at it as something that’s moved in on your life, uninvited to boot…

So you’ll keep a stiff upper lip with your kids and work colleagues. But with your good friends, and us on here, you can be honest with how it makes you feel and how [removed by moderator] scary it is.

Sue

Thanks Sue

You have said everything I know is true, its crap, more than crap. Like you say, expected but not quiet believeable. I keep saying to my husband, “how has it come to this” never in a million years did I think I would end up on here but here I am. None of us want to be here but we are all in it together. I really do appreciate your kind words and support, I have read a lot of comments on here over the last few months, replied to some but mostly just read and taken comfort in the fact that there are lots of people feeling the same and all at different stages.

I go through different moods, some days I can conquer the world, others days I feel like i’ve no future, if I am totally honest with myself i’m scared.

There was one lady in clinic when I got my diagnosis, smiling away and walking with sticks. She will never know how she made me feel but it was hope for the future, its not all bad.

I need to be optimistic as the other end of the scale scares me [removed by moderator]

Mel

The fact is Mel, that you’ll deal with it, whatever MS does to you. The options otherwise are not there for you, you’re a parent, and a wife. You will cope, just as you’ve coped with the symptoms and relapses that have brought you to this point.

And the truth is, we can learn to live with all kinds of difficulties in life. I’m proof of that, I can’t walk more than a couple of steps, and that with walking aids. I’ve not been able to use most disease modifying drugs due to side effects (the one I didn’t have any problems with was Copaxone - in my opinion, it’s a great, well tolerated drug, just rotate your injection sites). So I’ve had horrible relapses and have ended up really quite disabled.

But you know, life goes on, I’ve been to India twice (in a wheelchair) and have just come back from a cruise. I have a wonderful husband, I’m very lucky to have him, he lives with MS too, just as your husband will have to. It took a lot of years to get to the level of disability I’m at now - for the first 15 years I wasn’t too badly affected.

Sometimes I still don’t quite believe it. After 22 years, it’s not quite real. Yet it is. We still laugh, we still enjoy ourselves, still eat and drink well, we’re still the same people we always were. My good friends are still there. Still laughing at me, they don’t treat me any differently than they always did. The same will be true for you.

Sue

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Thanks Sue

You always say the things I want to hear.

My plan is to carry on working, I enjoy work and don’t want to give it up and at the moment there is no need to. I am a teaching assistant, its hard tiring work but the kids instanly make you feel better when things are tough and I have a very supportive head teacher who has already offered me reduced hours as and when I need it.

I am surrounded by great support, a few work colleagues, good friends, great kids and a fabulous husband. He always refers to ‘our appts’ ‘our situation’ etc. I am very lucky. And a fabulous MS team.

Things will settle down, I want to get started on the DMD but I will have to wait. I am very impatient!

Mel

Hi Mel,

Just reading your thread. I’m sorry about your diagnosis- however I am sure you’re also feeling relieved to have answers. I am also under Salford. I have just had an MRI head and CSpine (just over 2 weeks ago). My neurologist Sec called to say they have the results of my MRI and myself and my GP will be receiving a dictated letter about the results from my neurologist. I am not due to see him until 29th May. Did they tell you the results via post? I didn’t realise that would be something they would do? I’m in limbo at the moment. Have had symptoms of parasthesia in my left hand that was originally thought to be carpel tunnel. Sensations of hot water pouring onto my left forearm. Problems with my right eye vision with floaters and shadows. And intense itching to the point I am making myself red raw and giving myself blisters itching through the night- which is made worse after having a hot shower/bath.

I haven’t posted on here yet. This is my first post. Partly because I haven’t actually had a diagnosis and partly because I’ve had my own apprehensions. I felt like I could post and possible share experiences when I read your post and saw you were also under Salford royal.

Any advice/help would be grateful appreciated.

:slight_smile:

Hi Belle

I was diagnosed 2 weeks ago, it was entirely expected I had been well prepared by my MS nurse.

I had been in the testing process for about 12 months. The first brain scan was ordered by a general neuro, after these results which I received in clinic I was transferred to the MS clinic. Things progresses quickly from this point. I had a consult with MS neuro who sent me for another brain scan, 6 months on from the first and a lumbar puncture. Results of both these tests were received by letter.

The lumbar results came first, what they were looking for showed up.

The scan results came a week before my appt with MS neuro confirming original suspisions that I had relapsing MS. It was hard to read it in the letter but it meant I was prepared for my appointment and I had got the emotions out of the way.

I am now waiting to start treatment.

Although this is not where I want to be I have nothing but praise for Salford Royal. The set up is fab and the nurses are great I would suggest you go with whatever they suggest however scary it may seem. A lumbar puncture was suggested to me - with the words ‘lets bite the bullet and see what happens’ an LP isnt as scary as it sounds its all part of the process.

Your scan results maybe fine and no LP required, but try not to worry if it is.

Private message me any time, it is hard sometimes writing stuff on here.

take care, let me know how you get on

Mel x