Forum

Have I or haven't I?

New diagnosis and before diagnosis
#1

Personally, for me this is a difficult thing to do, putting my personal life out there, but hopefully by sharing my story/experiences it will help myself, and others.

For me it started in January 2012, I think!. I drove myself to work as usual, looking forward to probably another 10hr day, NOT. At some point during that day I noticed that my speech just wasn’t right. I knew what I wanted to say but it just came out as a load of ‘gobbledy gook’ and my colleagues noticed, but didn’t say anything. Apart from this, everything else was fine. The same continued for the next couple of days until I went to my next job. Working away from home I decided to take myself off to the local GP, who then admitted me to hospital that night. They initially suspected a stroke, but after CT scans, blood tests and other scans, was later ruled out, and it was here that I was initially introduced to the possibility of my condition being MS.

At that point, MS to me was a picture of someone housebound, in a wheelchair and being cared for by others, narrowminded I know, but I now know how wrong I really was.

After being discharged from that hospital and seeing my GP to continue tests at my local hospital further symptons arose. I lost the use of my left arm and left leg, also had a drooping of facial features on the left side, as well as speech problems, these took approx 1.5 months to fully clear. After such time a MRI was undertaken, to be then informed by the Neurologist that ‘Legions’ were apparent upon my L/H side of my brain, again MS was mentioned. A lumber punch, and a bloody cracking headache afterwards supported the idea of MS. At this point I was referred to an MS consultant who confirmed a case of CIS (Clinically Isolated Symptoms) had happened in January 2012 and although all the tests pointed towards MS until a second ‘episode’ happens a definative diagnosis can’t be reached. My frustration is after being told that, ‘Yes I am displaying signs of MS but it my be other things’. Now I can appreciate that the brain is a very complex organ but for all tests to stop and not to rule out the ‘other things’ is beyond me. I feel its a case of ‘waiting for the inevitable, second episode, to happen’.

Well its just gone January 2013 and guess what…heart attack!, as if things couldnt get any worse. I dont know if the constant dizziness is a result of medication, blocked arteries or a second episode!. Not looking forward to next January :)!!

Apologies for waffling on a bit. I haven’t put everything in there as I would like people not to fall asleep before they reach the end. Is it just me or have other peeps been/are in the same predicament?

Thank you for taking the time to read my story. :slight_smile:

#2

Hello and welcome,

Your not alone, lots of people are in the same boat known as limboland. until something else happens then you can get diagnosed. Have a look at the macdonald criteria for MS, this is what the doctors look at to diagnose you.

It must be really hard for you and no doubt stressfull but your in the right place. Maybe seek a second opinion, and dont wait for a second episode, sometimes people never have a second.

Wishing you luck.

#3

Hi Brummiefella, and welcome to the forum…

Sorry you’ve been having such a rough time of it!

Awful for you having to wait to see if they’ll be another episode… but it’s not unusual to be diagnosed with CIS. I can’t remember the stat’s for people dx with CIS to have another episode… 50% sticks in my mind. We have a user called Rizzo who I’m sure will respond as well and she knows much more about this stuff than me. Anyway I can assure you that you are not the only one in the predicament!

It’s very tough for you and now having to deal with the heart attack as well. Do you think it was caused by stress? If so, is there something you could do to lower stress levels?

I’m glad that you are now aware that if it is MS it is not the end of the world!

It is very difficult sometimes to get an MS dx… apparently more is known about the universe than the brain… and you will see a lot of people on here stuck in limbo because they don’t fit the precise criteria for a dx.

Anyway I hope coming on here helps. It’s great to be with people who understand!

Pat x

#4

Thank you for the replies guys.

My job is/was a stressful one, although I dont think it caused the attack, says doctor me! :). High Cholesterol is hereditory unfortunately, and although I have never smoked, don’t drink much, watch my diet and am not overweight its taken 44 years for my liver to catch me out!.

As I mentioned in my very first, and hopefully not my last, post I did have a narrowminded attitude towards MS, but not any more. When you read about how things are progressing and how far they have come there are positives to be taken out of it.

THANKYOU!

#5

HÍ Brummiefella

Limboland is very difficult I can appreciate as I was referred to neurology Oct 2011 and I still don’t have an answer.

In terms of why they aren’t doing more tests to investigate other things: I don’t know your whole story but it seems like they did do blood tests which could be used to rule out vitamin deficiencies/thyoid problems/ lupus and other things but of course I don’t know exactly what they did. Just trawling through this forum you’ll realise that the word MS is rarely mentioned unless the doctors ave ruled out other things (they don’t want to get it wrong though of course they can sometimes). There isn’t one specific test for MS but it sounds like they have done an MRI and LP which is usualy used to confirm diagnosis in addition to there clinical assessment.

Though you have been told you have had a CIS of MS as Pat mentioned there still is a very good chance you may never experience another episode. Stress and worrying about it (though it’s easy to say) won’t help you and can make MS patients relapse and have another episode.

I’d get your heart sorted that’s priority at the moment. Speak to someone about the dizzyness in case it is a new symptom of MS or something unrelated to get your mind and rest one way or the other. Then enjoy te health you have - even if this does end up being MS it isn’t the end of the world a lot of people go on to have very fulfilling lives - quite a few people on this forum are testament to that.

Speak to your neuro about anything new that happens. Otheriwse, eat healthy, exercise and try to keep those stress levels down tey won’t do your heart or MS if that’s what it ends up being any good.

Good luck. It does get easier to deal with it all with time.

Reemz

X

#6

Hello and welcome :slight_smile:

I won’t repeat all the excellent advice already given :slight_smile:

The fact that you have lesions on your MRI (it’s lesions, not legions) and your lumbar puncture was positive means that you have quite a high chance of having a second episode and getting a diagnosis of MS, but it is about 80%, not 100%. So, as the others have said, lots of people never have that second attack and there is no reason why you can’t be one of the 20%. It really is best to try and forget all about it and live your life as normally and productively as you can.

The paper that lays out the McDonald criteria is free to download. Just google Polman et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. ANN NEUROL 2011;69:292-302.

Do see your GP about the dizziness. If it’s new meds, then it should wear off, but then so do MS attacks and it can be tricky to tell the difference sometimes :frowning: Hopefully your GP will be able to help.

While you’re there, ask about a vitamin D blood test. There is evidence that low vitamin D levels can increase the risks of relapses, and our vitamin D levels are at their lowest in winter :frowning:

Karen x