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Out of the blue with no previous history?!

Hi everyone I have a question for you all. I’ve looked a other posts about how long people have had ms for and how long they had been diagnosed for and all of them said that they had suspected that they had for years prior to the diagnosis.

My question for you all is did anyone get diagnosed after an out of the blue occurrence? It looks probable now that I have ms (saw a doctor yesterday who suspected that my new arm symptom is a relapse and therefore 2 episodes- awaiting MRI and neuro appointment in 2 weeks by which point a firm diagnosis will be made). What the doctors and even the private nueurogist found strange is that I have no prior symptoms at all - I basically had a bad virus in April and it turned really bad that I needed to go into hospital and that’s when they scanned and an MRI showed 1 lesion on the brain and they classed it as demyelination. The neurologist a few weeks ago had classed it as CIS- he even said given my history he would say I was 30% of having ms in the next 15 years but said that he didn’t think at this point that it was.

My aunty who is a physio said that my new symptom is more fitting with a trapped nerve in the arm especially given the fact it started after waking up lying on it awkwardly and I don’t have any reduced power in the arm at all. I’m 98% sure it’s now going to be ms but just find it weird how things can happen completely out of the blue after a bad virus with no previous history of anything! My gp even went back to records 20 years ago and other than viruses and general bugs I’ve had nothing of relevance other than a car accident 10 years ago and then my mum dying from cancer 3 years ago and me having cancerous cells on my nose 4 years ago. Basically what I’m trying to say is that none of them fit with ms so find it really bizarred how things happened out of the blue!

Hi Karina,

I think the first symptoms are all out of the blue.  I had optic neurits 4 and a half years ago. I was not diagnosed as I was not referred to see a neurologist by the opthamologist.  You are very lucky that you have had an MRI and seen a neurologist.  I'm not an expert, so I cannot say whether it is MS or not but you have been given an early opportunity to address the problem.  My friend was diagnosed early and was treated early with beta interferon, her MS stabalised and 12 years on she has no symptoms at all.  I haven't yet started treatment yet as I need a follow up MRI.

I would go back to your neurologist and ask him what your options are now.

Hope this helps,

Adrian

 

 

 

Hi Adrian thanks for your reply. It all started in April and the only reason that I’ve been getting things done is because I’m working the system and paying privately when needed.

That’s a good sign that your friend hasn’t had any symptoms. Its the horrible bit of not knowing what it means from now. I kind of feel like my life is over - me and my boyfriend split up as he said that he couldn’t deal with it if I had ms. It’s amazing at how many things can change in such a short space of time!

Just feel unsure of what to expect

My first symptom was out of the blue in July after a bout of shingles in the Spring. No previous history whatsoever. I was told far too early to talk about MS, although no one pretended it was not a possibility. A couple of months later I got double vision and was posted tnto the MRI scanner and that was that, pretty much.

Whatever is going on for you, I hope you find out what is the trouble soon. If it does turn out to be MS, that is bad news, obviously, but it would not be the end of the world, honestly.

Alison

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Hi Alison was it last year that you were diagnosed? Have you had ant relapses since?

Im just trying to gather as much information as possible so that I know roughly what to expect. At the moment I feel like all my future plans are out the window!

Hi Karina

I'm undiagnosed (neuro ? episode of spinal inflammation at the mo).

My first major symptoms started 2 days after I'd had physio work on a L neck problem (oct 2011) (I already had pins and needles in my hand which the physio had said was because of a trapped ulnar nerve in my neck). Anyway - I developed pins andneedles in my face and leg on the L and my leg was numb, bladder and bowel also affected. They intially though stroke - but no. It was a difficult time a month before this -  I got the news from the police that my partners brother had died and had to tell him over the phone as he was abroad looking after his dying mother who died ten days later.

Since then I've had ?MS hug in April and ?TN in May. ?Pseudo flare up at the moment as I've had a chest infec. Though my neuro wouldn't comment or explain - he's useless and trys to brush things aside and tells me to get on with it - I'm waiting for a second opinion.

Looking back I'd noticed stiff l leg when running since march/april 2011 and thought it was just lack of stretching, acute torticollis, L wrist pain with strange temperature sense september.

Before 2011 I never had any major issues - just normal coughs, colds, gastroentiritis bug - nothing major.

My scans showed non-specific brain lesions no spinal cord - though neuro has said it's ? spinal inflammation.

It is hard thinking about future plans. Me and my partner were thinking of buying a place, telling my parents about him and I'm writing a book as well as working FT in a hospital all things I love. It's scary thinking I might not be able to do some of those things if I get worse sometimes. I try not to over think - try and enjoy what I can do now. Doesn't stop me pushing for answers though. Hopefully my second neuro will be better.

Hope you get answers soon.

Reemz

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Hi Karina,

That's no  problem.  It certainly isn't the end of your life.  I was diagnosed four weeks ago.  It's an incredible amount to take in, I'm still in shock myself but you have to have a positive outlook.  You obviously have a very supportive family, which is brilliant.  You are young and you only have one lession. I have ten.  You have been diagnosed early.  So these are all positive things.

I have got myself a counsellor which is one of the best things that I have done.  She is great and I really look forward to seeing her.  She has referrred me to group counselling which deals with chronic illnesses.  I'm sure this will be really benefitial.  I feel that I have had MS for five and a half years.  I have had attacks but i have been pretty much symptom free until the beginning of this year and have been in excellent health.  

MS is a very unpredictable disease but I'm sure if you maintain a healthy attitude and do the right things, it can be managed. As I have heard a lot of people say,  I have MS but MS dos not have me.

I hope this helps.

Adrian x

 

Oops - sorry, I did not mean to mislead - my relply was very badly worded, I’m afraid. I’ve been dx for ages - 13 years! I was just trying to make the point that it all happened very fast (which it did) but did not read before pressing ‘post’. Blame my age.

Alison

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Thanks for the reply Alison. As you’ve been diagnosed for some time do you have symptoms now or does the medication control everything? I’m just trying to gather information as to what I can expect and if I can expect to have a rough time of it or if there is hope.

I think the hardest thing for me to get my head round is that I thought you had to be recovered from an episode in order to get a relapse. I haven’t get over my episode from April and although I’ve got a new symptom part of me thinks that it could be a trapped nerve as opposed to a relapse. When I described it to my Aunty (she’s a physio) she said it sounds far more like a trapped nerve than a new symptom of ms. I’m on oral steroids now as of yesterday morning (40mg a day) - thing is steroids can be used for a trapped nerve so if it recovers how will I know whether it was a symptom of ms or a trapped nerve!?!

Sorry it’s all very confusing and the registrar was very definate that it’s a relapse and therefore ms and said that a new MRI scan it would definitely show up a new lesion- from reading things on here though people have said that you can have a new symptom without a new lesion - am I right in that or have I misunderstood?

I started Avonex as soon as funding was secured (it was touch and go in those days, as anyone dx back then will remember) and I did very well on it for about 8 years. After that, things got a bit hairy and I’m now on Tysabri and doing well on that. The DMDs really are a blessing, and mine is the first generation of MSers that had a chance to get the benefits. There’s good new stuff being developed all the time, as I’m sure you know.

I am not an expert on relapses or on lesions. My own experience is that relapses can overlap - they don’t wait in an orderly queue! Some people are lucky, and early relapses resolve completely. Some of us find that there is always a certain amount of residual permanent damage. It varies enormously. There is lots of good and authoritative material on the main part of this MSSoc site, and that is the best place to look for the best info available on the technicalities. As for whether something MS-related is causing your arm problems, well, the MRI will tell, more than likely. They’ll know exactly what to look for and where they expect to find a lesion if that is what is causing the trouble. No method is fool-proof, but the MRI gives a remarkable amount of information.

Alison

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Everything is hinging on the MRI scans and next neuro appointment - so glad that I’m paying privately and getting it done quicker and will deal with the bill when it arrives!!

Im soooo hoping that things are made clearer and even though I desperately hope that this arm thing is a trapped nerve at least one way or another I will know and get on a treatment plan!

Hi Karina,

I had no previous symptoms prior to this disease rearing its ugly head.

My bloods during the diagnosis period did show that my body had been recently been trying very hard to fight a virus, although I had not been feeling unwell, so had no idea I'd had a virus. A lot of experts believe a virus can be the trigger to  develop MS but who knows?

With me too, it was suspected I may of had a trapped nerver, if only!!!! 

MRIs, nerve conduction test, bloods, lumbar puncture...MS diagnosis.

Also established my Vit D3 levels were acutaley low, another suspect in developing MS.

I too was very fortunate to go Private, so all the tests etc were very quick.

I wish you well and the reading you are doing will help you to understand, this understandable disease, if that makes sense!

Clare x

Thanks Clare - I’ve read up a lot about it but I still don’t really know what to expect until it’s definitely diagnosed and as to what type. Also I don’t know whether medication controls things or whether I’m likely to have new symptoms regularly… It’s all a lot to take in when things are in the air as to what to expect from this all

Something has to be the first time. Sometimes with MS, it's a biggie that can't be ignored, but for a lot of us, the early signs are teeny or simply easy to write off as a bug or a hangover or whatever. But it all starts somewhere.

How bad it is is not necessarily an indication of how bad the future will be either. For example, I know someone who was paralysed by her first episode, but no one would ever know she even has MS now, more than 10 years later. In contrast, my neuro and I worked out that I had various mild grumbles years before the biggie that led to my diagnosis. (My MS is mild too, but "worse" than my friend's.)

We really are all different. And MS is nothing if it's not unpredictable!

 

The good thing about being diagnosed with MS these days (if there is such a thing!) is that DMDs are getting better and better plus there is some brilliant research going on with things like stem cells and myelin repair. We still don't really know what causes MS, but we are getting very close to finding out what can minimise its effects. 

For example, Tysabri has been shown to reduce the number of relapses that people have by 81% on average, according to data collected post trial, in clinics. And there are still drugs going through trials that might be even better. Unfortunately, the research is lagging badly for progressive MS, but there are more trials going on and more money being invested in that area too.

The future is uncertain when you have MS, but there is no doubt that the drugs available to fight it are better than they've ever been, and getting better all the time.

Karen x

I’ve heard a lot of people talk about Tysabri and how good it is - is this a drug that is hard to get given the option of going on? I want to make sure that I can see if I can get it once the neurologist appointment makes the diagnosis of ms but not sure if it’s readily available to everyone or if there is a waiting list or criteria for it etc.

I’m still thinking that my neck and arm thing is actually a different condition and not related to the demyelination. My neck is really painful in the disc and when I move my neck or have it in certain positions that pain is worse.
My aunty said it sounds like it could be a prolapsed disc or trapped nerve in my neck especially as it all started straight after the manoeuvres to my head and neck and the neck pain came on later that day. Taking ibroprofen and on oral steroids so that if its a new lesion and new symptom then hopefully the steroids will bring the inflammation down. Problem is the ibroprofen isn’t helping the neck pain and in certain positions the pain is horrible :frowning:

Tysabri is a second line DMD which means that it is only prescribed to people who have relapsed on the first line drugs (the injectable DMDs) or to people who are diagnosed with aggressive “rapidly evolving” or “highly active” RRMS. The reason it is not available to everyone is mainly because of logistics & cost (it’s given by monthly infusion in hospital) and because of a rare, but potentially fatal, side effect called PML.

Your shoulder/arm thing may well be physical, but whether it goes away with whatever treatment or drug you take isn’t a good test I’m afraid - relapses go away too. If you see a physio or ortho and they think it’s physical then it almost certainly is and it’s only sensible to do whatever they recommend to treat it. If you find it goes away unexpectedly / so they’re surprised or there’s a new lesion in your second scan later this year that ties in with it, then maybe it wasn’t. Sometimes only time will tell.

I can’t remember and it’s tricky to scroll back on my phone so sorry if you’ve already said this, but you have seen someone about it haven’t you? You need to see a physio at least. (A phone consult with your aunt is not good enough.)

Karen x