Last reply 5 months ago
Just been told

i have just been told i have ms , although i am waiting for blood tests and lumber puncture to confirm 100 % ,neurologist is very positive this is the diagnosis .
i am not certain what to expect , but now have muscle pain in righthand side ,under ribs and across stomach, pain in lower back ,left thigh numbness , and generally not feeling well.
would these be symptons i could expect . at the moment i am taking Pregabalin 1 in a morning and 4 at night . i did have steroids 5 a day for 5 days 3 weeks ago when originally i was told .
as stated i just dont know if this could be ms or something else

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5 months ago

Hi @billwood ,
Welcome to the club….
We’ve all been here so we all have a pretty good idea of what your thinking.
Might sound a little daft but please just slow down and stop stressing it just makes you feel worse.
Feel free to ask anything you like.
And try and see the lighter side of things. That helps.
I’m sure the guru wil be along soon to say hi he’s called @stumbler .
Keep smiling.
It gets easier once your up to speed.

5 months ago

Hi @billwood and, as mentioned above, welcome to our exclusive club.

I agree with @highlander, take a seat and put your feet up. And, whilst you’re relaxing there, take this time to do a bit of preliminary reading about MS. In this game, knowledge is power.

Here’s a good place to start. Select the “Newly Diagnosed” tab :-

MS is capable of causing the symptoms that you mention. But, so can anxiety and stress. It’s a good job you now have your feet up. 😉

But generally, eat healthily, live healthily AND avoid stress. Stress is a major protagonist of MS.

And, let us help out in building up your MS knowledge.

5 months ago

Hi @billwood and welcome. I’m one of the old codgers. Am 62, have had the beast for for25,years. Been through it all and like my mates, Highlander &Stumbler will reiterate, don’t stress about something you can do nothing about, ask anything you want, somebody onthissite will know the answer Remember with ms, there’s no such thing as a silly question😍

5 months ago

Hi Grandma . i am one of the even older codgers 66 but only found out a few weeks ago and still all new .i have been told it will come and go and maybe today is one of the days it has come . i am still doing some work , having had my own business for 44 years,and have had a busy week ,so maybe this has not helped . my specialist has not really told me too much about what to expect , just sending me for more tests and then said he will prescribe dmt . looking on the internet ,these are too hold it back because there is no cure ,i gather

5 months ago

Hey! I have to say, limbo land is a horrible place to be and I think when I was in such it made me worse. I started coming up with all sorts of other symptoms.
Let us know how your LP goes and someone is always here for a chat if you need to talk x

5 months ago


Hi & welcome…

First things first; you are going to die – actually everyone on Planet Earth is going to die. It is our journey along the way that should make life worth living. Now that we got that clarified, let us chat… 😉

I am 62 years old living in Canada & was diagnosed with PPMS in my early 60’s. My diet has completely changed; every morning the first thing in my stomach is Vitamin D. And if I have not had fish for a few days, Omega 3-6-9. My present wife makes me fruit Smoothies to drink daily – fresh fruit tastes better but I’ll take frozen berries. And a variety of nuts to munch on while I am watching TV.

Bread in scarcity, no milk whatsoever, no red meat (i.e. Steaks or burgers) whatsoever. As much fruit & vegetables as possible are in my stomach daily; fish (wild Salmon) whenever we can afford it. Plenty of fluids – the problem is that I need to be close to a washroom due to MS bladder challenges. Life isn’t perfect (sometimes embarrassing) yet I enjoy the good while dealing with the bad.

Second, you are the exact same person as you were before the recent health challenges. Exact same likes & dislikes; your friends will stick around so long as you keep the attitude & personality you have had all your life. Nothing will change with your family. There may be some physical challenges that force you to adjust what you can & can not do at work & at play; but I am fairly sure you have made adjustments since you were a teenager.

Finally, please update your profile outlining the type of MS, country of origin & other information so others in similar situations can relate, our responses should be more helpful to you.

Feel free to post & keep us updated. Ask whatever question you like – we are a very diverse group of people from around the world with our unique experiences & thoughts.

5 months ago

Hello @billwood, yes, lots of welcome also. There are several of us ‘at the more senior end’ of the diagnosis range. You are in excellent company! The Lumbar Puncture is the only thing that can really confirm diagnosis. There are lots of tips on here for looking after yourself after the LP, use the search button. My biggest plea would be for you to avoid googling. Stick to sites like MS Society and similar. I don’t know what country you’re in but would be good too. If the diagnosis, then I get what a big shock it is. But you will recover and get through it. Please keep us posted and treat yourself well x

5 months ago

I’d say don’t expect much negative signs they’d probably appear if you do
And live along with MS it can never kill you
You could live long with it symptoms free based on your activity stress level and mentality
You better think of it as an annoying baby lol you cant harrass ut

5 months ago

Once you have a diagnosis, you’ll have a medical team to sort you out. With the right MS meds and loads of advice on how to manage the condition successfully you’ll start getting back control. Before diagnosis there’s no support, only anxiety so this is the time to be gentle to yourself and indulge in as many treats as you can. Bring out the wine, chocolate, box sets……. xxx

5 months ago

i am in UK ,and still working
i am waiting to have lumber puncture and blood tests but specialist is as certain as he can be i have relapse and remission ms . i have been taking pregabalin 1 in a morning and upto 4 at night for 4 weeks since diagnosed and cannot say they are doing anything . i did get a prescription for amitriptyline and these seem to help a lot , although can only take at night since they knock me out .
at least now ( have been going privately upto now )i am now on the nhs radar and have an nhs ms nurse visiting end of next week to talk through ms in general.
Maybe i can then get sorted out with the correct drug and get my life back in order again .

5 months ago

Hi old codger how’s things going. Didn’t say earlier but I was dxd 25 years ago, was on Beta-Inferon fir 23 years, and was changed to Tecfidera at the start of this year. When originally dxd there were no dmt’s but Avonex came out the next year and I want on the trial. Was tols the rrms would become spms in 10-15 years, it took 23 so not complaining and hence the change to Tecfidera because in the last 18 mths everything has gone, and after 24 years I. My dpfeet with it, am now in an electric wheelchair. Mr council have very kindly put me a though lift in so I can go upstairs and a huge ramp at the front so .I can drive wheelchair straight into house. Live on my own, gave no carer just 2 Airedales but there is nothing we can’t do. Just remember we’re always here for a natter,and remember, with ms, rhere us no such thing as a strupid question😍

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