Another step closer to a full diagnosis...

New diagnosis and before diagnosis
1

Ive had my MRI scan before christmas wich showed large amounts of white matter.I have seen the neuroligist who recommended a Visual evoked response or potential (VER or VEP), plus a lumbar puncture.

I had my VER test today wich had to be done a second time,due to I was having spasms and tried to control them wich made my upper body ridgid wich interfered with the test.I did manage to relax my upper body and the test went well.

I am now waiting for the lumbar puncture appoinment wich I have been told is painfull and gives you a server headache.

I now feel I am another step closer to a full diagnosis and all tests point to MS.

I have been prescribed Amitriptyline but they just do not work on the pain at all.I have a reveiw about this medication on the 30th,I am sure they will up the dose.

Although I am pritty ill and unable to do much for myself of late I am staying positive,I am getting the tests I needed,wich means a step closer to treatment.

I was chatting with a friend about her brain tumors a few days agao and she told me her 10 yearold was registered as her carer.This has shocked me as my 10 yearold is only my baby and I didnt see her as a carer.Yet she helps me to move around the home,she helps make beds,clean house etc etc.I had to come to realisation that actualy my baby was my carer and it shocked me.I feel so guilty that my baby is loosing part of her childhood due to me being so poorley.

There is no easing of my symptoms of late,Ive got stuck in the bath tub due to my legs refusing to work,the constant pain my body is in,the fatigue is so bad I can do nothing but sit or lay down.But I am fighting back.I dont give up easily,I will do as much home chores as possible,I will fight the pain and walk my child to school,Im not ready to allow this illness to take control of my mind and body.

There are big changes on the way and I have to deal with them.I have to accept these changes I have no choice.But I am not going to be dragged down.

The slurred speach,I used to take a deep breath and repeat myself,I give up,I no longer repeat myself,if you didnt here me the first time then thats not my problem.

Im still a happy person,life is for living,bad things happen its how we deal with them is what matters.

2

Glad things are moving for you - it does make everything a bit easier, knowing that an answer could be just around the corner.

There were a few things I thought I’d better say…

Lumbar punctures aren’t normally painful (assuming it’s done properly of course) and it’s only a very small proportion of people who get the “headache from hell” from it. Chances are that you will wonder what all the fuss is about once you’ve had it done! Lying down as much as possible afterwards and drinking lots of caffeinated drinks (like coke and coffee) can help to prevent the headache, but hopefully you won’t get it anyway.

There are alternatives to amitriptyline for pain, so make sure you get the right med when you see the neuro on the 30th. If you can’t wait, you can always see your GP.

Baths aren’t always the best of things for MSers. This is because they affect our body temperature more than showers or washing by hand. When our body temperature increases, our symptoms can get worse. So, if you can’t shower, try using cool water in your bath - it might help to prevent your legs giving up on you.

I hope you have a really productive meeting with the neuro. Let us know how it goes!

Karen x

3

heya…thats great news…sounds like things are speeding up for you…I agree with Karen re baths…I opted for a walk in shower thing…its easier and quciker and def makes a difference re legs…could you ask social sevices if they could come and adapt your bahroom…ie remove the bath and put in a level access shower/enclosure.(this is an rectangular shower base with a half height enclaosure…which means you can shower and if you need help a carer can assist you from the other side…if that makes sensce…).you can get a pull down seat which fixes to the wall…grab rauls etc…

good luck with neuro…

em

4

Thanks Peeps.

I have a shower with a seat already in the cubical.Yes I should use it,but I tried the jet wash shower heads and jumped out of my skin and said no way…Silly me.

Yes I read that heat can cause issues for MS suffers,I now understand that when the weather is sunny and hot is why I feel worse than usal.Everyone says you enjoying the summer,em no.

Ive just moved into this house and it has a downstairs toilet wich makes things a little easier.The light switches and power sockets have all been lowered or raised to a level for wheelchair users.The door frames are slightly wider than the usal and it is all tiles or woodflooring.This makes it easier for myself and child to clean.

Thankyou Rizzo as I am a little worried about the LP,my neice keeps telling me I will be in hospital for a good few hours,I am not listening to her.I will find out when I get there.She stresses me out.

I know Social Services are an option but I feel I can fight this and carry on as things are for now.Maybe its my stubboness and refuse to ask or admit I need the help.

Things are looking up for me of that I am sure.People are starting to understand why I act the way I do or look grey and tired.Sometimes all you need is someone to listen and understand.

I will find out about the medication as it realy is not helping me at all.Im learning something new all the time.

Charlie,x

5

Hi Charlie Please try not to worry about your LP. I had mine in July last year and the whole thing was fine. Just a sharp scratch for the local anaesthetic and then some pressure for the LP itself. I stayed flat on my back for an hour - absolutely no headache from he’ll! Try to take no notice of people’s scary stories, they really don’t help! I hope it goes well, Teresa xx

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Thankyou Teresa,I am a little worried,but I am sure I will be fine…Fingers crossed.

x

7

Thankyou Teresa,I am a little worried,but I am sure I will be fine…Fingers crossed.

x

8

I’m glad things seem to be on the way to a diagnosis for you. Have nothing else to add that the others have not said apart from the lp. I had one and even though it didn’t go to plan it was fine. He hit a nerve on the way in but it just made my jump but he just took it out and tried again. It really was fine, no headache from hell, a little back ache for a couple of days but painkillers helped. Lots of love, lindsay x

9

Hi

My results of my brain scans were exactly the same as yours with added hardening of the arteries also a abnormal spine. I also felt like you that I was getting closer to dx but it can taken a long time it is difficult to wait. As for the LP I like you dreaded it after reading some posts I can HONESTLY say I found it painless even the local anaethetic jab did not feel it I would have another one rather than go for a filling at the dentist and my dentist is really goood. There is no point in saying do not worry but you will anyway but believe me I actually found it all quite a relaxing day and I wish everyone who has a LP posts on here to stop people worrying. I did ask the young doctor why did I not feel anything and she laughed and said you were too busy talking think I gave her my boring life story but she did say the needles are so thin now and the only time she had found it difficult was with patients who are really overweight.

Good luck and the wait is the worse thing you can contact me or any of us I am sure if you want a chat. I should be giving myself that advice lol.

Jan

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Ahh thankyou,you are all so kind and understanding and make me feel a lot better…

All these tests we have to go through and all the waiting is so stressfull.I will be glad when it is all sorted out…

Bless you all.x

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The waiting is dreadful and you think it will never end but it does and then you can go ahead and get on with your life. Hope it’s all sorted sooner rather than later. Fingers crossed. Teresa xx

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Thankyou Teresa,I am only waiting for the LP appointment then its back to the neuro and hopefully we can start from there,onwards and upwards.

Im a usaly positive person,I see this as just another hurdle to jump.

X