Limbolander Forum

[MrsAristotle]

Hi guys I noticed there are a lot of limbolanders on the MS forum.

I am not sure if you are aware but I started a forum for lost souls lol the Limbo Landers in 2009, where undiagnosed peeps could just chat and talk about their experiences, and get help and support through their journey. At the moment we have just over 400 but a few have now left us as they have been diagnosed with an ABC of diseases.....which is good and bad at the same time.

http://www.medhelp.org/forums/SURVIVING-NEUROLOGICAL-LIMBO-LAND---NO-DX/show/553?controller=forums&action=show&id=553&camp=msc

The forum is for people with symptoms which could point to many diseases that incorporate MS symptoms.

ADEM
Lupus
Sjögren's Syndrom
Myasthenia Gravis
Sarcoidosis
Human T-cell lymphotrophic virus-1
Vascular diseases
Other diseases are occasionally confused with MS. These include fibromyalgia, M.E. and vitamin B12 deficiency, muscular dystrophy (MD), amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease), migraine, hypo-thyroidism, hypertension, Beçhets, Arnold-Chiari deformity, and mitochondrial disorders

Just a few for us to be getting on with lol.

With our little community our members who have been diagnosed with other diseases other than MS have the experience now to support others who are desperately trying to find out what is wrong with them. We do not focus just on one disease like Multiple Sclerosis.

Its a very frustrating journey, and we all need support from each other. Our forum is practically run now by the members lol, as during my 5 year journey in limboland I have fallen off the wagon and did go into depression, but with the help of my crew who have done nothing but support me through out I am back again a bit more vitalised and stronger for the fight.

What do I have? No idea it probably is MS because I have two areas of my body attacked. OPTICAL NEURITIS and spinal lesions...both at different times.

The one thing though that I have learnt stressing over it is not helping so now i take a more laid back attitude as what dont kill you just makes us stronger, and I have realised that. MS does not kill us...our lifestyles does that, and stress is one of the worse factors.

Anyway I just thought as there was a limbo land count down thread going on that I would pop in and tell you all wonderful peeps that there is a place just for you to visit if you feel the mind to.

Let us hope that in 2012 everyone gets some answers.

Big hugs from Mariaxxxxxxxxxxxxxxx

[Mike_Shuswap]

I spent a lot of time, and got a lot of support on the limbolander forum before my dx.

Thanks so much Maria for creating the LL forum!

Mike

[sllowe]

How about two? (((Hugs)))) Mrs. A - (((Hugs)))) Mrs. A

[Lulu54]

Mrs. A,
We will be happy to indulge in group hugs - I'm sorry you need some extra TLC right now, but we could all use extra hugs.  

I wish there was the way of tacking this message on the front page for a week or so that our people in limbo will see your words.  That limbo group sure has grown and I am always happy to hear when someone figures out the mystery diagnosis.

hugs,
L

[MrsAristotle]

Hi guys....group hug on its way......waves...

I need a hug right now.

xxx Maria

[sllowe]

Hi Mrs. A!!!!

All -
Mrs. A was a regular on our MS forum, and starting the limboland forum was so needed - while some on that forum are still a part of us, I can totally see why it's important to not focus on one disease.

I wonder if they will pop in and say hello too! I hope so :)

To our limbolanders,
I hope you take Mrs. A up on visiting that forum because we all need each other, and I'm sure some of you get sick of the MS focus now and again. Some new perspectives may be helpful too.

Since it's the weekend - we'll have to keep Mrs. A post bumped up here.
Thank you so much for popping in and offering your services! It's a testiment to the close ties and relationships forumed here on our forum family. Here to support and help no matter what.
((((Hugs))))
shell

[Sidesteps]

*waves hands* I'm still here Maria! I think a group hug is coming.

[essdipity]

Thanks for this post, Maria. You are so right--where MS is perhaps not in the cards, many other diseases and conditions may be. There is support for all of you caught in this quagmire.

It's never a good idea to latch on to just one idea, because that may mean ignoring other aspects which could bring symptom relief, a name for what's wrong, possibly even a cure.

I urge limbolanders to keep an open mind as they battle whatever it is. Be your own best advocate and don't give up. But please don't misinterpret my meaning--of course you are welcome on the MS forum. Everyone is.

ess