I don't care how scary your symptoms are - DON'T jump to conclusions!

New diagnosis and before diagnosis
1

My limbo journey began back in the summer of last year when I began experiencing a catalogue of symptoms I could only place as being those of Multiple Sclerosis… I was terrified. You can see my journey in this forum perhaps if you do a search for my username? I posted here throughout the course of my limbo.

These were my most notable symptoms:

  • I had terrible brain fog that I made me feel out-right empty-headed: I could gaze ahead for hours on end with not a single thought pass through my brain.

  • I had terrible fatigue that left me pretty much bed-bound.

  • I had extremely strange tingly numbness in my upper thighs that I noticed when I couldn’t feel the razor as I shaved my legs.

  • I also had tingly numbness (on and off) in my left cheek and around my lips.

  • My co-ordination began decreasing as I found myself having to think before I put my first foot out to walk down the stairs. If I didn’t do this, I risked tripping over.

  • I have “one and a half” syndrome in my eyes: something found in some MS patients.

  • My voice felt weaker and less strong than before.

  • Muscles “glitching” in my hands and limbs - moving suddenly or pulsing.

  • Dizziness.

  • Difficulty swallowing.

The fear of having this condition that I previously didn’t know much about, and contemplating the uncertainty of the rest of my life was such, that it led to me having a full-on break down in my doctors office and very quicky becoming suicidal. I was taken to accident and emergency requiring immediate attention physically and psychologically and put in the hands of a mental health crisis care team (who were terrible, but that’s another story entirely!).

I was referred to a neurologist and given an MRI scan of my brain, neck, and spine.

To cut a longish story short, (and to cut down the long waiting list times!), the case is closed on my neurology. - All of my scans have come back fine, and my neuro is happy to refer me to an eye doctor to see about my “one and a half” syndrome which relate just to my eyes.

I see the pattern in my concern. - It seems that the problems I listed were as a result of extreme stress and anxiety. I see the pattern whenever I feel I am put under a lot of stress, I also have tendancies of hypochondriasis, which to me is a Master at mimicking symptoms of other things.

Whilst I am at a point in my life where I can now more soberly accept the fact that I could still have MS, or still get it at some point in my life, much more so than before, I must urge those of you who have been in my position who may be fearing for their lives on the basis of any scary symptoms they may be experiencing, to TRY to stay as calm as humanly possible.

You do not know if you have it or not. But one thing is certain here: the more you worry, the more you look up symptoms, the more symptoms you feel you have, and the more ill you will feel!

The best thing you can do for yourself, in ANY case, is to try to relax and just do things that make you happy and calm.

Your body will thank you for this no matter what you do or do not have.

Wishing you all peace.

  • Shiller. x
2

Thanks Shiller,

Although your title is a bit exstream, everyone is going to jump to conclusions no matter how much support they have as the strongest mind will break. It is unfortunate what happened to you but i am sure people have had it worse who actually suffer from MS. I am confused if your warning is not to jump to conclutions because you did and ended up having a break down?

I feel for you but again even with Hypricondria your post is a little unfair, not everyone will turn out like yourself or get your results with the all clear. I am still waiting for a DX and it is worrying and it does put strain on the person and their family. Its good and natural for people to worry and they use these forums to express themselfs and say things they would normally bottle up.

I broke down in hospital I couldnt remember the last 2 weeks but they did find things on my scans and in my LPs. but with the love and support for my wife and family and friends I am pulling through. each day is a worry and it will be for anyone.

Appreciate your adivce but dont feel its suitable for everyone, we know not to worry and try to stay calm but reality is it will get to us all at some point and most people are hear to help.

I also agree not to look up tests and diesease e.t.c but if you are a hypricondriact it will effect you differently, for me I searched because noone was telling me what they were doing, i search all the blood tests to see what they were actually checking for. It didnt make me feel I had these things. I have a diary right down how i feel each day, what ive been doing and how I have been feeling. this helps.

Good luck for your future

3

Tom, my whole point was that jumping to conclusions can lead to problems in it’s own right. The whole point of a “conclusion” is that you DON’T know what is going on with you for sure (thus, applying to those in limbo like myself, rather than those who actually have been diagnosed, or are still unsure as to what is going on).

My symptoms were as real as anybody elses, and yes, I suffered cruelly (enough to want to end it entirely myself). The point I was trying to make was that writing yourself off in ANY way can only lead to worse things.

My post was for those like myself who aren’t sure what on Earth is going on, and who may be through Hell with panic and already telling themselves they have it. I know for sure I would have appreciated a post like this back in the day. I didn’t mean to offend or upset anyone.

4

I didnt take offence, and like you I am in Limbo land, going through simular symptoms and the list goes on and on, I just felt it was a bit strong but I am sure others won’t.

I appreciate what you have put, and yes dont jump to conclusions, but when the waiting game is soooo long as we all know, it is inevitable that we will make up our own minds eventually because given the creatures we are and given enough time, all we have is our own brain to battle with and it can be hard.

5

I understand 100% Tom. <3 It is incredibly difficult waiting, and there can be times where our minds simply cannot help but wander. I do think to a certain point it is healthy - but for me, I went over-board with the over-analysing, and it just went into very bad terretory where I overwhelmed myself with worry rather than a more healthy effort at pure self-preservation by taking all possibilities into account.

Wishing everyone nothing but the very best.

6

I think it’s a difficult and individual situation being in limboland. There are going to be some people that need to have information and want to find out about things because they aren’t getting help or aren’t being believed or just want to be netter infromed. Then there are other people that need to not read becuase they are so worried that they’ll latch on to anything they read and think the worst.

I don’t think there can be one set of rules. I certainly felt I needed infromation and I haven’t gone off the deep end thinking I’ve got all those things wrong with me. If I’d have not believed in my judgement I would have been stuck with a neuro not willing to help me making me think I was a hypochondriac when I know quiet rightly what’s happening isn’t normal and not down to anxiety. I’m a happy bunny, love my job, have an amazing partner… nothing major to be glum about and even through difficulties (not to paint my life through rose tinted glasses) I smile and get on with it :slight_smile: Even though my new neuro hasn’t diagnosed me (and I’m open to MS or anything else they think I have though it is possible MS at the moment according to them) I’ve been listened to and am happy to wait and see even though I still have symptoms knowing I have someone who will listen and get to the bottom of it should a new problem arise.

So, I’m not in disagreement with you Shiller. In your case I can see the thought of having something like MS was not good for you and it’s sad that it affected you so much that you thought of taking things into your own hands. I’m glad you’re in a better place - thats the most important thing.

Best of luck and overall staying positive is a good thing for everyone I think.

Reemz

Ps: Out of intrest what did they say had caused your one and a half syndrome?

7

I agree with this - I have done the same rooting around and researching. Not because I’m a hypochondriac but because i want to be informed and after 2 years of seeing every Tom Dick & Harry - I don’t feel anymore like I can trust that everything has been done as it should have been or things that shoul dhave been ruled out actuallly have been ruled out etc!!

It’s definitely an individual thing - the only time I break down is when after being so ill for so long and struggling day after day - yet another mishap/mistake happens!! Then I have a good rant and a good cry and pick myself up and get on with it again

I’ve just had my MRI spinal scan results back - they seem to have been done properly this time - no sign of lesions so as far as I’m concerend it’s looking more likely that it’s definitely not MS - but I know the brain scans weren’t really done properly - so I’m going to insist on a decent one & if that comes back clear then with immense reief I’ll say goodbye to MS

But - I’ll still keep pushing to rule out a myriad of other things - until they find out what IS wrong with me and I’m satisfied they’ve got it right!!

xxxjenxx