Forum

well i didn't expect that

Just got told today that i probably have MS, to be honest still stunned, needed time on my own probably to sulk and feel sorry for myself

But found this web site and wanted to know how others coped and whilst getting my head in gear are there any obvious things i should do to start with

thanks for your time, hope you can help

Hello, and welcome to the site

LOVE your avatar - that is one gorgeous, soppy looking dog

It’s kind of late, so my apologies in advance for a brief reply (I really have to get to sleep!); I’m sure others will add more when they get up.

“Probably MS” suggests that your neuro isn’t sure and is still doing tests. In which case, try and keep an open mind - it may not be MS.

“Probable MS” is a completely different thing. This is a proper diagnosis meaning that you meet one of the two main criteria for a diagnosis of MS and that new symptoms are required before you’ve developed full MS and will be diagnosed with MS. The good news about this is that not everyone with probable MS actually goes on to get MS. The bad news is that there really is no way of knowing who this will happen to (there are things that can suggest it, but it’s not certain).

How do you cope? The million dollar question. I guess we just do. It takes time, but gradually we learn that life goes on and that it’s actually not the end of the world. But it’s a bumpy ride to that point :frowning:

Be kind to yourself. Don’t bottle things up. Make time for your loved ones because they are scared too.

Take it one day at a time.

You’ll be OK. Honest.

Karen x

Hi cardo.

I am in a similar situation to you, I think.

I had one pretty awful attack back in March. My first one. Am pretty much recovered now apart from slight pins amd needles in fingers and toes on left side and sometimes feel fatigued.

Anyway, had neuro apppointment, had an MRI, one lesion showing so not enough for a dx. Have also had lumbar puncture, VEP and bloods taken. I go back for follow-up appointment and tests results next week.

I came here to this site during the attack because everything else I had read about didn’t quite fit.

I still thought it could be something else (something more simple and treatable) but my neuro, at my last appointment, hit me with those words ‘Multiple Sclerosis’ so even though I had already found very similar symptoms myself, it was still a bolt from the neuro when I was wanting reassurance that this wasn’t MS.

She didn’t sugar-coat it. She said she was pretty sure. So, it’s just a waiting game really to see if I have a relapse.

Very hard to go back to living your life as before when you have this hanging over your head and I have dealt with it as I usually do and have become a little more reclusive and closed off to real-life people.

Oh, and comfort eating! Not good for the old waist line. I need to reign that it pretty quick smartish.

Hi Cardo! I was diagnosed in May after around 8 years of symptoms and about 6 years of tests and unanswered questions. Firstly, everyone with MS is different, and while for the unfortunate people who are diagnosed with primary progressive ms it must be absolutely dreadful, it is honestly always the tragedy that the idea of ms evokes. My diagnosis came after thorough testing by elimination - while consultants were saying ‘it’s probably ms’ my newest doc maintained that diagnosis was key as we could then move onto treatment. I was tested for everything under the sun, but nothing else fit. The only thing that did was MS. Perhaps bringing this idea up with your neurologist might help? It’s important to remember just to live one day at a time. Don’t sit there contemplating your future. Bar my flare ups and symptoms that serve as a reminder I actually ignore it most of the time and forget. And this is baring in mind that I have sort of had overlapping flare ups since last November pretty much non stop! Try and do things to help yourself - healthy food and vitD supplements could help with fatigue etc… And remember, it may not even be MS! But whatever it is, you have to face it and get on with living your life! Xx

P.s. I meant it isnt always the tragedy that MS evokes…! Woops. Changed the whole meaning there! X

P.s. I meant it isnt always the tragedy that MS evokes…! Woops. Changed the whole meaning there! X

Hi Cardo,

My situation sounds identical to yours. I was told 3 weeks ago today by the neurologist that I have inflammation on the brain & spine caused by MS. He wants me to have a lumbar puncture to confirm but he was 90% sure it’s MS. I had symptoms 2 years ago, which was tingly fingers on my right hand and the tingly feeling from the neck down my arm when I bend my head forwad (lehmette’s sign I believe). I had a neck xray which came back clear and was referred to hospital for nerve conduction tests, which also came back clear. After about 2 weeks, the tingling disappeared and I was back to normal(!).

All fine until November 2011 when my left side went numb. Couldn’t feel a thing - VERY WORRYING! Made an appointment at the docs but by the next day, the numbness had improved and it was only my left hand and foot that were numb and tingling in my fingers and toes. I also had the lehmette’s sign back again. Went back to the doc who didn’t know what it was but thought it was probably nerve damage - his exact words were “how very baffling”. Had all sorts of tests, including bloods etc and they came back clear. Eventually at the end of December he referred me to the Neurologist. I had my first appointment with him at the end of March and he said that he thought it was spine related rather than nerve related and ordered an MRI scan of the brain & spine.

I had my MRI on the 15th May and saw the neuro on the 29th June when he told me he thought it was MS. I felt exactly the same way as you - wanted to be on my own to take it in, especially as I had geared myself up for him to tell me that he didn’t know what it was! I’m now waiting for a lumbar puncture and then the results of that.

This website has been a great help to me - the people here are all lovely and understanding. Don’t bottle it up though - the more people know and understand the better!

Hope this helps a little!

Sarah

Hello and welcome to our happy band of people.

I am dx and on treatment but was only dx this year so can empathise with how you feel.

Everyone else has said all that I could add,so mine is just a hello,and limit your reading to trusted sites like ms society and trust. That will tell you all the facts,and then ask away on here for the reality.

There are crackpots out there site wise. Just remember you will never get all the signs and symptoms as ms is totally unique to everyone in how it presents itself.

It is adviseable to download some fact sheets as you will find—if you do have ms,there is still hope it wont be-- that most people know next to nothing about it…inc gps.

Be kind to yourself

Pip

Hi I would like to talk to someone, I am not so sure what is wrong with me. July 2010 was the first time I felt unwell. Very painful headaches, and blurred vision. Feeling totally unwell, however I could not really explain how I felt. This lasted a week or so, and after that I was fine. Lots going on was planning my wedding, had lots of issues at home teenagers!!!

Then next attack was Nov 2011…Sent home from work with awful headache and vision problems…Fine the next day!!!

The following week felt very strange, and I had awful balance problems, dizzyness sickness, total fatigue, and I never saw xmas. Went back to work i April, but once again off with balance problems and blinding headaches. Had tests for Meniere’s Disease.

Has anyone had any memory problems and finding it hard to take in what people are saying and doing practical tasks?

Would just like to know what is going on with me!

Jan

Thanks for your messages the fact that people have taken time out to reply means a lot.

To up-date you this wasn’t a random visit to my G.P. in fact in a very strange way i’m glad i now know what it is, as i feel i’ve been giving the run around by my doctor with all the various things i could have been suffering from. To the stage where even i doubted i was ill and should just get on with a bit of pain and discomfort.

In a perverse way luckily i fell and damaged my ligaments in my foot, as the doctor in A&E wanted to find out why my balance was so bad. So 3 MRI’s and a CT scan finally got me to Neuro where i got the news. I still have one more MRI of my brain to go, but the fact that he told me its MS and he fact that he’s writing to my GP ,leads me to think he’s not likely to come back and say whoops sorry its a slipped disc

So i’m on day 2 of getting my head round this, i have found reading your stories helpful and have noticed there seems to be support groups all over the country, its nice to know there are people to turn to

i have many questions to ask and hope people have time to answer them

again thank you for your comments my Basset Hound is a great listener but doesn’t come up with many solutions :slight_smile:

You can ask as many questions as you like…and nothing is daft.

If it worries you,or you just want to know,ask away.

What you will find hard is trying to explain random or odd sounding things,dont worry we all understand that expressing buzzing legs or boa constrictors being wrapped round you,there will always be loads of folks who know exactly what you mean.

Reading back through old posts is always useful aswell.

Are you off work because of it at the moment?

Pip

I’m not on the sick, but i’m on leave at the moment, hadn’t thought about telling work, i assume i will have to

Who to tell and what to say is up to you.

You do not have to tell work, but my personal opinion is you should tell your line manager,purely so they can look at making reasonable adjustments to your role–if required-- and to be a support to you.

Once the ball starts rolling you may need alot of time off for appts etc,so I think its best to come clean,and say at the moment its not confirmed,and it may take a while to know one way or the other.

Limboland is a very difficult place to be,which is why it is strangely a relief to have a dx.

You may be the type of person who is happy to share so as I say it really is up to you. You will know yourself if your work is of a type that you must tell someone.

Hang in there

Pip

Hi Again, I am off work have been since Nov 11… Tired to go back in April 12, but just so ill. I have had tests for Meniere’s Disease, and Iam waiting for the results, just in limbo, and its driving me mad. Its also having a effect on my family.

Just would like to talk to someone who is feeling the same.

Jan

Jan it would be better if you start a post of your own as you are getting lost in this thread.

If you do that then you will get replies solely to you and your concerns

Pip

Cardo,

I am new on here also, I have a post on here which is titled “ll the symptoms but no MS”, of course it should have read All the symptoms…

But briefly my symptoms stated 18 years ago, completely numb in my right leg. But surfice to say I am still here. I have got some new symtoms now so I am going to my GP August 13th, not sure if he will find anything but I suppose it is time to have a check up. Good luck with all of this, it is possible to live with if the sysmtomps are not too horrific.

What a bag of laughs this MS is :frowning:

Went to see my GP who has put me on gabapentin. had to tell my kids what was wrong

As a 54 year old Yorkshireman who doesn’t do emotion, has suddenly started blubbing at Gold Medals. Emmerdale and a bad weather forecast :slight_smile:

My nature is to keep everything to myself and i will figure it out. One of my friends rang and basically threatened violence if i didn’t tell him what was wrong

Again i end up a gibbering wreck but learnt there are people that care about me

You don’t know me but if you did you would understand how difficult it is for me to make this so public

Even if nobody reads this for a momment i felt happy to just open up

Your body and mind have had a shock so you are freewheeling on the ms rollercoaster.

There is always someone on here that will read you posts and this forum is an excellent way to practice voicing your thoughts and emotions.

Once you see in black and white what is going on in your head it is often easier the next time when you talk to folk.

Take care and be kind to yourself

Pip

I was Dix in June and have recently started gabapentine too. I find it helps coming on this sight to know that so many others understand how you are feeling. I am lucky to have a really supportive family and group of friends. Life is different with ms but it doesn’t mean the end of starting new adventures. I flew out to France on my own for the first time yesterday to stay with friends. I nearly didn’t come because of the ‘what if’ things go wrong or I have a relapse. My hubby encouraged me to go though and said if you start thinking like that you never will go. So here I am, having a wonderful time. My point is this is not the end you just have to approach things differentlyand with a positive attitude and life still can be fun. You may need extra breaks just be kind to yourself. Give yourself time to adjust and then deal with things as they happen rather than worrying about ‘what if’ they do. Its just a new chapter not an ending. Wishing you well. Mish x