I know for many of you 'limboland' (pre-dx) was a while ago, but does anyone have any tips on how to get through it?

For 6 months I have done the internet-research thing on MS, I've consulted many types of natural therapists, and now I've stopped all except my chiropracter, which was a regular thing anyway - all with no substantial answers or improvements.

All my bloods, MRI's, VER's are clear.

I see my neuro next week - to discuss results of last MRI, (which I know was clear).
I know I'll have more direction once I see her, but this is awful waiting!!

I'm tired of answering "I don't know" when people ask why am I limping.
I was emabarrased this morning in front of my ex-husband and his wife when they came too pick up my kids, and I just forgot the simplest of words (I hate it when that happens... more so nowadays). They're both quick talkers, and 'intellectual' types.....
I've told them nothing of my sx/health issues.

I know this is such a common topic, and I think I've started a thread like this bfeore not long ago!! but....
I just don't know what to do next.
I know just "being' and getting on with things, and coping with the sx is all I can do. How do I do this without going nuts?! Life feels like it's on hold.

I sound like a big whinger, but I'm usually a very smiley positive person!!

Any tips anyone please??!!
Thanks.

i feel for you. it's very difficult to know something is wrong and not be able to find it, or for your drs to find it.

sometimes with MS it may take a few yrs for lesions to show up on an mri.
i would start a sx (symptom) journal. that way you can document dates and sx's for your dr.

you may have to wait 6 mos before they want to do another mri.
i'd see what your dr recommends.

you might also consider some short term counseling. that may help you deal with the stress of waiting.

try to make some kind of plan of action. like journaling, retests in 6 mos etc.
if you have a good friend to confide in that might help. for me, having a plan of action helped me overcome some fears. anxiety can make MS worse.

stay with us and we'll try to help you thru it. it helps to have someone to talk to.

A Really Excellent Paper about what Isn't MS

In a nutshell, if you're having limboland, this is a good list of things to work the process of elimination with. Ken

its horrible to be sick, and really, truly KNOW you are sick, and not be able to point to an Xray, or MRI, or peice of paper on blood work to say "I told you so!" some MDs treat you like you are whining, or just looking for a way to get out of work. Family starts looking at you like you just dont want to help them. its soooo frustrating!


You KNOW when something is wrong, but in this current medical field we are unable to prove, and or disprove many many things. There are more than 100 diseases that mimic MS. Sjoghrens, Lupus, Lyme, and so on. The test for Lyme is extremely sensitive, and should be sent to a special lab for a special test. Most regular labs that test for Lyme get greater than 50% false positives! They miss it frequently. Same for spinal taps, unless your MS is in an ACTIVE phase, the Obands wont show up that proves MS. Its truly hunting for a needle in a haystack full of needles.

Whether its MS, or viral, or Lyme, or a vit def, I hope you are able to maintain the energy, support, and drive that it takes to chase down a diagnosis. You are welcome to come here, and whine, and question, and pick whats left of our brains. We have so many that live, and lived on Limbo island. You are in good company.

Hang in there!

Freesia - I'm sorry to say that I know exactly how you feel.

I'm in limbo too. Most tests show as normal but a few point to something being wrong...just not pointing to exactly what.

I'm sitting here right now feeling extremely dizzy and fatigued. Lots of painful numbness too. But no answers, no treatment...

I've been going through this for almost a year now. It definitely stinks to say the least.

Lots of to you. Keep looking for answers, you know there is something wrong, eventually the MDs will figure it out.

Gaia

Somebody, early on, told me to use this time to get adjusted to the idea of whatever it was I might have. Good advice.

Made me realize I was lucky to have this time to do that. Because I started seeing a lot of posts from people who had no clue they were at all unwell till one day something came up and they got blind-sided with a dx of ms.

I though -OMG! How do you wrap your head around that, right out of the blue?

I saw the extremes, from instant dx, to those who waited over a decade. And you know, they all survived. And some of them told me if they could do it, I'd live too. They knew how tough it was, all of it, the sx, the drs, the tests, dealing with family, waiting for answers - getting the answers.

None of this is easy, but you'll find you really are strong enough to do it and you have friends who went there before you to show you how, friends who will come along aftert you that you will show the way, too.

If I had known then what I know now, I'd tell myself this:

Live today. Don't wait until you have answers, until you feel better, until so and so gets it, etc. Just live today, just the way it is.



MS limbo since Jan 2003.

Thank you so much for your supportive replies.

NurseNancy - I do keep a sx journal, and will organise it to take to the neuro on Tuesday. H aven't seen her for 2 months and a lot has happened since in terms of new sx's and a major flair up fo sx's.

I have fortnightly counselling nowadays, and she's been good in terms of practical advice for dealing with the sx's. eg, "hire that chair at the shopping centre - treat it like I have a broken leg, and not be embarrased."

notasperfectasyou - thanks for the link. I've seen that paper in one of your posts before. I started to go through it, and cross off or highlight things to the best of my limited medical knowledge!

Gaia314 - thank you. It's awful isn't it? 12 months is too long for limboland. I hope you get answers soon.

braingonebad - your advcie was wonderful. thank you so much. Yes, I know with my head this is what i have to do, but my heart is struggling to adjust. I can't continue to have my life on hold. This year has passed me by already and I need to live with the 'new normal'.

Having had neurological sxs for almost 10 years now with no real answers or dx... yes you can say limboland expert!

I have had vertigo spells, I deal with weakness in right side, numbness/tingling painful but thanks to neurontin now I do not feel the painful part as much. I have spasticity and on baclofen for that, lack of sensation on the right side.
When stress or overtired, it all is worse, oh eye blurriness on that right side... and other stuff. Side drs like neuropysch that I seen for my memory deficits, and any other side kicks.. PT dr etc... all will ask me Have you been tested for MS?? any neuro I have seen says they do not know... or that it all is anxiety without any anxiety sxs.. and that I am clear of symptoms when pregnant since I am happy then..... (people who know me I have always been a happy go lucky person... and calm and just easy going) PT dr was like no way are you anxiety type that would get to the sxs you have been dealing with.

anyhow..sorry rambled...

How do I get thru it, well I do my best, I try to remember life is short and keep enjoying the kids and family time. I work full time on my feet which is tough but I keep going basically. On tough days, I sometimes have tears... but I have hubby support thru this all so much it makes a difference.

find a GREAT doctor is my advice, one that even if tests are clear he listens to you and how your body feels... good luck and hugsss,sarah

Dejibo - I was trying to be really thorough and reply to everyone and I forgot you! lol

Frustrating is an understatement!
Some friends I speak to think it's 'stress' (I hate that one!)...but most have stopped trying to guess now, or refer me to their whizz-bang natural therapists who cured Aunt Betty.. etc.

Sabimax - 10 years!!!!
I have nothing to whine about!
I do have a good neuro. She says she knows it's not in my head, or stress related. She said stress usually presents differently.

I'm trying to be organised and start charting my sx's on the computer. I use a notebook and it's a mess.
I know there are 'symptom trackers' on the net. Does anyone know of a good one where you can enter your own symptoms and personalise it?

Just because the radiologist's report says "nothing has changed" doesn't mean "nothing has changed". My first MRI had 2 spots, which wasn't enough when correlated with my hearing loss to give me an MS diagnosis. I went 2 years with really no symptoms to speak of and had 2 MRIs where the radiologist's report said "no change". After the 2nd one, I almost didn't go to the neurologist for the annual followup, thinking whats the point.

I did, and after she looked at the MRI scans, she came back and said "a picture is worth a thousand words". What the radiologist meant was that there was no change...in that I still had unexplained high intensity spots on the MRI. Except now instead of 2 I had 5-7...and an MS diagnosis.

So don't be so sure that the MRI is clear just because the report doesn't mention anything...go in with an open mind and talk to the neuro. If you trust her and believe in her, let her do the job you are paying her for (to figure out what is wrong).

Other than that, don't worry about not having a name for it. Just live your life to the fullest doing the things you CAN do and don't worry for now about not having a name for the things that you can't. Live your life instead of living your disease...whatever disease or affliction it may turn out to be.