Life goes on....Rant alert!!

New diagnosis and before diagnosis
1

This is my 3rd time typing this post as I have somehow lost it twice…

Ok so sorry about the rambling that are about to happen but I just need to vent and have no one else I can talk to.

I have been getting tests since January and so far all they have found is one lesion at C4. I have had 3 episodes since and think i’m just starting my 4th (who knows). I have lots of sensory symptoms, bowel and bladder problems, brain fog, major fatigue, pain and numbness. I have 2 children one of which is only 2 and I have 2 part time jobs…I am really struggling!!!

It was only when I broke down infront of my GP last week I realised how down and angry I was. She wanted me to take some time off but I can’t afford it and anyway, what do I say to work as " there is nothing wrong with me". I also can not let my other job find out anything is wrong because at the minute I am only temp but next in line for a job if one comes up. No one understands or trys to for that matter but then who would blame them as I don’t even know for sure whats going on yet. I told my mother inlaw about my leg weakness and that I can only walk to the end of the drive before my leg gives way. Her responce was that exercise will help GRRRRR!!!

The only people I talk to about it all now is my husband and my mother who try their best but really unless you have been through it, you really don’t understand.

I constantly ache and shake from the fatigue. My children think I am useless and grumpu all the time and I can’t even take them to the park incase my 2 year old runs off and I can’t run after her.

Another thing is, my musband and I are newlyweds and only got married less than 2 months ago. We have had sex twice since and I just feel like complete sh*t about it. I know he says he understands but it will become a problem and I don’t know what to do. I am so tired that by the time we are in bed I can barely move. Also my legs gets so bad and all my sensory symptoms mulitiply too.

I know I had much more to say but the brian fog has made me forget what else I was going to say.

I hope I don’t offend anyone as I know there are lots of people that have things far worse but I just think if I had a name to whatever is wrong with me it might help a little. That people wouldn’t think I am lazy anymore or making it all up.

Thanks for listening x

2

None of us thinks you’re lazy. I’ve just done a little cleaning (a little) and I’ve ended up lying on the bed exhausted! You’re right no one understands unless they are going through it themselves. it is hard for you and your husband just now as you’ve only just got married but he married you because he loves you and will learn to understand better than he does now. I relate to the fact that you would like a label so that others would empathise with your situation. I am still ‘probable MS’ at the mo’ and find it hard. People do not cope well with disability of any sort it seems. I think they believe they will catch it from you or something! Please hang in there, things will improve - they won’t always be this hard. Thinking of you. Teresa xx

3

Hello Anon,

Rest assured, a confirmed lesion in your spinal cord is NOT “nothing wrong”.

This is a serious problem in its own right, and just because it hasn’t got a better-known name like “Multiple Sclerosis” that more people would have heard of doesn’t meany you’re fine, or are imagining it.

There should be no issues with taking time of work, as there IS something the matter with you. Your doctor should be able to write on the sick note “central nervous system inflammation”, or something of that nature.

I’m really not clear why you’ve been given the impression there is “nothing wrong”.

Just because it doesn’t have a poncy name doesn’t mean it’s nothing.

When I had a spinal cord lesion, I thought I’d had a stroke! It’s not an insignificant thing.

Tina

4

Who told you that there is nothing wrong with you??? Whoever it was is a bloody idiot!

The spinal cord is about as thick as your thumb. Every second of every day, millions of messages get sent up and down it, reporting on and controlling every single feeling and movement we have in our bodies.

Imagine a really busy motorway; cars hurtling along at 100 miles a hour. All the cars heading north are going to the same destination: the Brain. All the cars heading south are going to different destinations, but they all have to use this motorway; there is no other route.

Suddenly a hole appears on the northern carriageway at junction C4. The drivers coming onto the motorway further north are laughing because they’re fine - but everyone else? Well, further back all hell’s breaking out. The 4x4s are managing to go over the hole but it’s slow & hard work (your motor fatigue?!), but the smaller and sportier cars are very confused (your sensory symptoms!). The police are on the scene, trying to re-route traffic but it’s such a big backlog and head office (the brain) is getting very mixed information and deciphering it all while trying to keep normal operations going is proving impossible especially as there are reports of less media worthy events happening elsewhere (this is my not so subtle reference to the fact that clear brain MRIs doesn’t always mean clear brains).

And on the southern carriageway? Well, let’s assume that these drivers don’t rubberneck, so we’re lucky there isn’t a crash over there (and my story can finish :-)).

It might be a silly example, but what I’m trying to say is that a lesion at C4 is NOT nothing. It has the possibility to interfere with everything coming up from below that point, and with everything coming down from above. The fact that you are having multiple episodes and are suffering from extreme fatigue suggests that there is more going on too. PLEASE try to rise above the lack of understanding from certain quarters. Your symptoms are very real.

Try not to feel guilty about the lack of a sex life too - it’s important to talk to your husband about this - waiting till bed time is a bad idea, cuddles are good too, check out some of the free booklets about sex & MS on here and on the MS Trust website. On a different topic(!), there are some brilliant children’s booklets on the MS Trust website which I thoroughly recommend you read with your kids too. You may not have had MS diagnosed, but I don’t think it matters a hoot. It will help to explain things to them.

I know your mother-in-law’s comment wasn’t entirely helpful, but there might be a grain of truth in there - you should ask to see a neurophysio - they might be able to help you get those legs working better.

Finally, please consider taking some time off work. It really can make a world of difference.

(((((hugs)))))

Karen x

5

Bless you - not knowing what but knowing it isn’t right - SUCKS!

(((Hug)))

Clarexxx

6

Hi, I know exactly what you mean about ‘nothing wrong’.If you say possible ms. People seem to think it’s like you saying that you think your possibly starting with a cold.It seems like most people don’t understand that the symtoms you have are very real.I’ve been told by drs etc to get on with life , don’t worry about a dx. it would be easy to if the symptoms would go and i could use my hands.Everything is a struggle from the start of the day, trying to get dressed.scissors are too compicated to use, buttons, hell it is a pain.

sometimes it helps to talk,

lynn