Forum

For what its worth

I have been lurking for a long time and finally signed up. Then, I did one post (I think it was 1 post, I have a brain like swiss cheese!) I got so incensed about another limbolander’s bad treatment by the system that I couldn’t believe it. I was trying to be supportive but, frankly, I looked like a complete t*t and it was embarrassing.

So, I decided to go back to lurking lol

Limbo can be all consuming. People in limbo (me included) can start thinking they are the most important thing and that their struggles to get answers and diagnosed is the single most important thing.

To be brutally honest, limboland struggles are not the most important thing, ask those who have been struggling for a firm diagnosis for over a decade, as some on this forum have been.

Living the best life is most important but no diagnosis and no answers from neurologists causes worry so we need and ask for answers because literally hundreds of us seem to be in the same limbo situation. In our search for answers we discover support networks, like this forum.

There are always people who seem more willing to do the work and the research to help with questions and believe me, it is hard work full stop much less with:

“MS/probably MS/I think I have MS/don’t know what I have but I def have neurological problems that interfere severely with my life…”

Those who demonstrate they are very willing to try and help are NOT giving answers, they are providing information.

Ultimately if you want answers it is your responsibility to gather information and then try to make your own informed decision.

Best regards to all.

Hi Tulip,

I agree, it seems like it takes ages for a diagnosis… I too am not dx yet…not even had my MRI and Nerve Conduction results back yet…even though I had them at the beg. of Feb. everyone seems to be avoiding the issue when I ask for them…I feel I’m being pushed from pillar to post…even though I’ve phoned up the neuro sec. twice now…If i don’t hear by the end of this week…then I’m on the phone again.

My GP seems useless even though he is a new one…I changed my doc once as the last one made me feel like I was an idiot making it all up!..

I’ve been on the internet googling and all my symptoms lead me to MS…when I tell the GP or Neuro…they tell me off for trying to find out about it…they say that googling is bad news…so we can’t win!

Good Luck,

Wendy.

Awww Tulip - You should never feel embarrassed for trying to help/support/give your opinion even if it sometimes comes out wrong as it so often does in ‘text’ x I’m sure you didn’t come accross as a right t_t at all so please stop lurking because a lot of what you said above makes a lot of sense!!

I wholeheartedly agree that limboland struggles are not the most important thing - unfortunately they can become ‘all consuming’ because people are scared - they have these horribly wierd symptoms and don’t know what is causing them. I know that I have become pretty ‘obsessed’ with mine - I try & try & try to ignore them and get on with my life but I hate to say I’m finding it impossible at the mo x

I started doing lots of research - but to be honest I found that so much scarier as I don’t really have the knowledge to assess it properly and was becoming too confused - I think that most of the research that finds it’s way on to the internet is about the more serious ‘stuff’ too!

Reading the posts and replies on here helps me so much more - just knowing others have the same things happening to them and that they understand makes me feel less alone in this. The responses of people who have been in the ‘same boat’ and found solutions is also invaluable to me x

I’m early days in limboland - having been ill for a couple of years it’s only since seeing the spinal consultant in November that MS was first mentioned to me & all ‘hell’ broke out to be honest!! The shock is however wearing off (albeit slowly) so hopefully soon I’ll be able to stop the ‘obsessing’ and get on with what you rightly say is ‘living the best life’ xxxjenxxx

Hi

Quick lunchtime peek at the forum :slight_smile:

Thanks to both Wendy and Jen for your replies, I really appreciate it. I will do less lurkng and more helping others, if I can. That seems to be the theme these days :slight_smile:

Happy Friday!

T.

I find advice from people who are in the same boat is far better and more reliable than just googling. I was bitten by a cat once and googled it, going by what I read I was lucky to survive the night!!

It’s not always about advice either sometimes it’s just nice to know your not alone.

Take care x

Cheers T!! Have a lovely lunch and a fab weekend!

xxjenxx