getting to know people

hi my name is sal, i would just like to say hi to anyone who is reading this post. i have been having a bad time coming to terms with ms diagnosis. I’m quite upset that i have received my diagnosis in two letters. who else has had theirs through the post.

i would just like to make friends with people who are going through the same struggles as me.

Merry Christmas to one and all.

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hi sal

i was diagnosed in 2008.

you sound very recently diagnosed and you need to come ro terms with it.

i also received my diagnosis by letter although my neuro phoned my mobile to check if i was ok with this.

he had taken on board what i said about the not knowing being awful, waiting for appointments would drag the waiting on so a phone call and a letter was the best he could do.

i trusted him totally.

maybe a post on the newly diagnosed forum would help.

carole x

My Neuro at the time told me to my face that I did not have MS, only to be informed by letter that I did a couple of weeks later. I liked his sense of humour. Mind you, that was back in 1998 and thought things would have improved a bit since then, but obviously not. Hopefully, more care will be taken when you go through your treatment options.

I was told I didn’t have MS, then 5 years later that I did. Like Whammel, back in the days when the doctors could tell you whatever they pleased.

I think it’s pretty shocking to get the news by letter though.

But then, however you are told, it’s not an easy time. Coming to terms with MS is hard, however you get the news.

You may find useful. The MS Trust has a lot of very useful webpages on all kinds of subjects (as does the MS Society of course).

Keep coming on here, if we can help, we will.


Hello Sal and welcome to the club where life membership is guaranteed.

Adjusting to your diagnosis is not easy but do not despair. Take time to explore what services are available to you, such as, physiotherapy and Occupational Therapy. Your MS nurse will advise you about these, depending on your needs.

There are many ways to manage your MS and I would suggest you take a look at the following website. You will be able to obtain a free book from the website and it is very useful.

I was diagnosed in 2014 with what my neurologist described as grumbling MS, his phrase for PPMS. It raised a smile at the time, and I rather liked it as it turned out to describe my condition perfectly.

Best wishes


Welcome Sal, I accidentally (on purpose) read my diagnosis in my medical notes when having the lumber puncher test in the hospital - the letter from the neuro to my GP on my MRI test result said I had a ‘demyelinating disease’. The reply letter from my GP asked, “When are you going to tell her??” That was 1997. Of course, these days these days you can’t get hold of the doctors notes because it’s all on the computer. Nice to meet you. Fay

My circumstances meant that I found out on my own. The diagnosis was then confirmed in a face to face appointment. I had some MS like symptoms in 1997.after a shed load of tests (I was living overseas at the time), the doctor advised “you either have MS or you’ve had a virus. If you get repeated episodes of the symptoms, you’ve got MS. If you don’t get repeated symptom, you’ve had a virus. Any questions?” I was a basket-case at the time, so I didn’t ask any questions. I had no further symptoms until 2003, and then slowly the same symptoms crept up on me and I knew what was happening without any input from the medical experts. This came later, via their confirmation. Derek

I got my diagnosis September just gone. I almost had to drag it out of the Neuro. Who actually said - didn’t,t I get the letter - which was a copy of the lumber and second mri scan results.I’ve found the whole process so frustrating and stressful. In fact I was beginning to think I had imagined that I had been diagnosed until I got a copy of the letter to the doctor over two months later. I’ve just had my third mri and will see Neuro in six months although the MS Nurse said I can phone her for the results. I assume depending on the result of the mri will depend on whether I get offered a dmd. I see in another post that you have a MS Nurse - were you able to explain to her how you felt? Have you a local ms groups in your area as well- that may help you as well.

I was told in person by the neurologist on 24th October 2017. Ironically I asked if he could confirm it to me in writing to which he replied that is wasn’t usual procedure as it tends to frighten people! I would have just liked it in black and white so that I didn’t convince myself afterwards that I had imagined it all! Fortunately my husband was there too so I have confirmation in the form of his memory too. I start my DMD’s in January,once Lloyds deliver them so if I am imagining it all I have a very powerful imagination!

When were you diagnosed? Welcome (if that’s the right word) to our exclusive club! Haven’t found too many perks yet but I have had a free flu jab and the cost of the DMD’s if they were’t available on the NHS made my eyes water! Got to look for the positives!

Take Care

I too was diagnosed in the mid 90’s. I was quite ill with aphasia and had MRI and CAT scan. Gets better slowly and starts a degree as a mature student. One year later, the GP tells me - you know those tests you had; well you have MS! I asked why they hadn’t told me a year ago; “we wanted to be sure…”

Well luckilly I’m a stubborn bugger and stuck at the degree and came out with a 2:2! Not bad in the circumstances. That was 93 - 95.


I was diagnosed in 1991 with RRMS, told verbally after MRI & lumbar puncture, following some horrid symptoms. I managed a pretty normal (active) lifestyle in between relapses. Following a holiday in 2006 no major relapses but a slow decline. Saw some useless neurologists but eventually found one capable of listening and straight talking, he diagnosed SPMS in 2007. I managed with lots of support from my employer to stay in work until 2010. Despite deciding never to travel abroad again I have had some brilliant holidays away. I still drive a motability car and still get out into the countryside in my Tramper mobility scooter, so I consider myself to be very lucky to have had a pretty lucky time of things.

All the best


Thank you for all your comments its nice to know im not on my own here. I have been having a bad time since im now in a wheelchair now im in so much pain with my legs. Anyway on a lighter note. Have a nice day. X

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Hi sa worrier.

sorry your legs are so bad. My arms are worse than my legs. It scares me quite a bit, as I’m not sure how I could do independent ‘life’ if my arms got worse. Personally I feel the fear of what might come along is harder to deal with than living with the symptoms I have.

hi chatterbox. yes i have an Ms nurse but i never see her or when i contact her i always get the answer phone message and it takes days before anyone gets back in touch with me. its never her though its someone else. i am so mad at the moment no one is telling me anything since i was dx. I hope you have more luck than me. i do go to a Ms coffee morning in Doncaster and they are lovely friendly people. you find out more from then than anyone else.

Hello sal, I couldn’t talk to anyone about my diagnosis for about 6 months, without bursting into tears. Now I’ll talk to anyone about it. My ms has definitely gotten worse but my ability to deal with it has improved. Don’t be too hard on yourself, and just try and look after yourself. X