Just about had enough now

Sorry to moan but sometimes writing things down helps.

Most recent diagnosis is Multifactorial, multifunctional balance disorder. Well… according to travel insurance and life assurance companies (several of them) this condition doesn’t exist! So I go through loads of questions with them all and they all deferr to MS. As I haven’t had that diagnosis I can’t agree to go ahead just in case its not.

Feel like i’ve been left rot, been having some very helpful neuro physio but it ends soon and then i’m on my own. I’m becoming more and more dibilitated , literally bluffing my way thru life right now, but don’t know if I have the strength to go on anymore. Just don’t know what to do next.

My neuro physio is astonished and annoyed I haven’t been given a repeat brain/spine scan and a lumbar puncture.

Now i’ve lost feeling in my fingertips as well as left lower leg, an area from neck down to my chest and my eyesight is getting so bad I that crossing the road has become a major issue. Tremors getting bad especially at night and speech slurred. On tp of the really bad vertigo its all too much.

I feel very much like I did before I had 2 major episodes that put me in hospital, one in May last year and again in October.

Whatever the factors are that make up this condition they are not being treated and it scares me that if I don’t get the right treatment for the right thing i’ll just end up totally dependant with no real actual diagnosis.

Tired of being treated like a hypochondriach, thats why I haven’t stamped my feet and demanded more tests. Why do the medical profession, especially neuros treat us like this? Sorry, rant over! xxx

Hi bunny I don’t really have any answers for you, but your frustration is so loud I couldn’t not reply. I am sorry that you have had to go through all this, just to get a non existiant dx. I don’t know why neuros are so quick to dismiss us all, but they do. Is there any way you could arrange for a second opinion, through your gp or if possible privately? I was fobbed off by a neuro with anxiety/fnd for a while until I got really bad, so I completely understand how fed up you must be feeling. Just remember you are your own expert and if you don’t feel right don’t settle for anything less than real answers, as exhausting as it is, you owe it to yourself. Best of luck. X

Hello hun. I fully understand your feelings, as I have spent many years having all the tests come back normal.

I guess I am lucky that I`ve not been discharged. For many years I presented with typical PPMS symptoms. I was wrongly diagnosed with it for some years. It was suddenly changed to a genetic condition. Then that was discouned and PPMS was back on the cards.

A year later PPMS was finally chucked out and my current dx is;

Idiopathic spastic paparapresis; ie cause unknown. The neuro who told me this, said it was an acceptable term for legal and insurance purposes.

I recently looked it up for travel insurance and of course the actual words arent there, but it comes under paralysis.

It was all very difficult to come to terms with in the beginning and even now, I sometimes feel like I am on the outside, looking in.

Is that how you feel?

luv Pollx

Thanks all,

Yes Poll I do feel like that. Its like i’m watching this other person who isn’t the real me but i’m going through her pain and illness. Seeing GP next week and hubby coming too and he;s gonna demand action.

Feeling very rough today, just like I did prior to my 2 previou collapses, so maybe close to some kind of relapse of whatever this is,

I guess I can only keep on pushing forward and look for help from somewhere.

I know you all going through horrid stuff too so thanks for taking the time to reply. It’s not like me to get down about things maybe i’m just over tired

Take care of yourselves peeps xxx

Hi again, you say it isnt like you to get down…but why shouldnt you? People say to me that I am happy, bubbly and on top of it all.

That is often the truth, but it is also sometimes a cover for how i really feel.

The thing about this ite is that we can tell each other anything and know we arent judged or felt a nuisance, as we understand.

No matter how much others try, they`ll never know how we feel. I have lost so many abilities/activities d am highly dependent on hubby and carers.

It is a difficult life but it is still a life I want to continue.

Hangin there hun and I`ll hold your hand in mind.

luv Polx

Thanks Pol x

You’re right I do put a bave face on most of the time, even for the medical professionals. Maybe I should sometimes just admit how I feel and let my body do what it wants, afte all sometimes we need to listen to warnings from our body and rest etc when it tells us we need to. maybe trying to battle on all the time can do moreharm tha good at times.

A couple of weeks ago I was really bad and even though I thought I was doing a good job of covering it up my neuro physio saw straight away. But she said it really helped her to see me that way as it gave her a much better idea of how things really are.

This site is a great emotional support, and bless you Pol you are often the one who picks us all up again

Pleased to say I have had a better few days so feeling a bit more positive and relaxed today

Take care.

Bunny x

Glad to hear today is better for you.

luv Polx