Forum

diagnosis

Afternoon playmates!

Seems to be quite a lot of folk getting their diagnoses lately. Those of us who are still waiting feel kind of jealous, in a way. Perhaps thats really just me! Dont mean to upset anyone by that remark, it`s just that 14 yrs is a chuffin`` long time to still be on that giddying merry go round!

luv POllx

Yes Poll I can’t really understand how you cope because it’s driving me nuts after such a short time.

I never really understood the concept of maybe having to live with something that is disabling and not know why.

You’ve been watching people passing through the process, whilst you remain in limbo is beyond tough.

I just love your posts Poll, and you’ve given me lots of pointers towards new interests and enjoying the here and now so a big thank you.

Gillian x

Oh Poll, I’m not surprised you’re so p’d off hun. I wish I could shout at them for you! 14 years is beyond a joke, do they never consider what if feels like to have this hanging over you? If there’s any way I can help let me know.

Mags xx

Hi, what can you do to help me? Well, howabout posing as my next neuro and giving me that dx? As I dont know what you look like, Ill never know, will I?

luv POllx

Hi Gill, good to know I`m still good for summat, eh?

luv Pollx

Hi Mags, be with me in spirit on 17th Oct, eh?

luv Pollx

I’m 5 years undx’d and thats bad enough… can’t image 14!!! And I am hoping I don’t get to 14 years without a diagnosis. And I know that sounds awful, but I am sure you understand completely!!

It sounds so silly, that we want a name for what we have got… after all it’s not going to change anything, it’s not going to alter our symptoms, and its certainly not going to fix them… but it just makes things … I don’t know… easier to deal with? … know WHAT we’re daling with? … easier to explain to other people? … it can actually make all the difference to us as daft as it sounds!!

Lots of hugs sent your way xx

Hi luv and ta for your reply. No I dont think it is at all daft that we want a name for our condition. Lots of people ask whats wrong with me and i vary my answers, depending on how im feeling! Its the same when some MSers say what does it matter which type of MS they have. It matters a huge amount…because that can determine which, if any, drugs may help.

luv Pollx

Totally agree… my post probably wasn’t clear… but I am so with you on this… I dont just want a diagnosis… I NEED one!! I truly believe it will make a massive difference and give me the ability to get on with my life!!

x

Hi Poll

I really hope you get some answers soon, and that you’re beginning to feel better after your horrible LP experience. I had a dreadfull time with mine too, they recently asked if I’d consider repeating it for testing for something else! Not bloomin’ likely! xx

Oh Poll

I feel like giving you a big old hug. Its horrible not knowing whats wrong - there’s always that doubt are people thinking its in my head, what if its something hereditary… Knowing gives you that closure no matter how good or bad the news is.

I’ve had symptoms for about a year and a half and have only been under neuros for about a year and my 2 MRI’s have non-specific lesions and I’ve found it frustrating. I can’t imagine how difficult it must be for you. You almost pray and hope the MRI/LP will show something more and then you can get an answer and just move on.

I wish there was something we could do or suggest that would help you.

But take some comfort in the knowledge that your presence your support and advice are worth its weight in gold to the rest of us on the diagnostic journey. Your day will come Poll I just hope its sometime soon now.

Reemz

X

Hi Poll, I really understand how you feel, like we all do. The last time I felt ‘well’ was when I was about 17, that was 23 years ago. I am beyond sick and tired of being just that. It upsets me so much that you have had to wait too long for someone to tell you what is wrong. I know this area of medicine is complex but surely, 14 years?!! I am only 6 years into having Neuro symptoms and I am already so nervous about my first appointment with a Neuro. I am petrified that it will follow the pattern of medical fob offs I have received my whole adult life. I know my little rant is of no use, sorry, I just wanted to say that I truly hope you get answers soon. Sam x

Hi Poll

I wish these numpty neuros would understand just how frustrating

this must be for you, beyond a joke now.

Do you have to wait until October to get the results of your LP,

surely they could write to you before then?

Sending you some (((((((((((hugs)))))))))) and flowers to

help cheer you up.

Pam x

Hi Poll

Know how you feel am in the same boat. I can trace symptoms back 40 years to when I was 10 years old but have only been going to docs with all this for 25 years and am about ready to thump one of them.

I cannot wait to say ‘I told you so’ and perhaps make an official complaint to the GMC about my GP’s lack of knowledge. Probably won’t do any good but it will make me feel better.

Don’t know about you but I won’t get any peace of mind until I get a diagnosis. I honestly believe that I will feel so much better once I am believed and ‘it’ has a name. It really is a living nightmare. I have not been offered a LP or even blood tests so those are my next fight.

All the best Poll, thinking of you. Dianne x

Hello Poll

What you said :wink: I feel happy when people escape limbo because I would not wish this on anyone but I cannot help but feel somewhat jealous.

Having a diagnosis, well, there are lots of positive reasons for neuros telling us what it is we live with daily.

Good luck

Tu (twelve years and counting)

The lack of a concrete diagnosis and what that means really gets to me too Poll.

I’ve gone over the last 18 years from ME, to probable MS, to ‘Neurological Symptoms’, to cluster migraines, to ME again, to siactica, back to ME again, Probable MS, undefined neurological condition, to ME, to MS, to Fibromyalgia and ME as well as a probable diagnosis of MS that is not currently being investigated further.

I feel people’s attitudes towards me and additional support and further treatments I could receive would be far better if I had a concrete MS diagnosis.

But instead I struggle on.

Aw shucks…you little sweetheart! Yes, it does please me that I may be helping others.

luv Pollx

No, dont go through another gruelling procedure. You know I also may have HSP? Well an HSP buddy told me that she got her dx via an LP. When I told my MS nurse/neuro, they dismissed it. I said wouldnt it be cheaper for the NHS to test for MS and HSP in the one procedure? No, I was told I can go for genetic testing if MS doesn`t show.

That will mean more anxiety for me! Do they care? Do they chuff!!!

luv Pollx

Yep, you and me both love. Youve been well and truly through the wringer too. Its a wonder were not in the psychiatric hospital. The sods wont grind me down…and I certainly won`t go quietly!

luv Pollx

Hi Tu, ta for your reply hun.

12 years for you…will we ever get a dx? Not sure. One of my neuros said I do have a dx…it is spastic paraplegia…cause unknown. Talk about a cop out!

luv Pollx