Limboland

[lynnepynne]

In another thread (about Autism and overdiagnosis) Thinkimjob brought up a very interesting question and I didnt want to hijack that thread with my lengthy answer. Here's his question:

I ask limbolanders this with the greatest sympathy and respect: what if what you have is not MS? And what if that diesase is being overlooked by your doctors etc because they're just looking for signs of MS?

I'd say most Limbo-landers ask themselves this question every single day.

My experience (completely subjective, of course) is that we are all pretty much going through many many rounds of testing etc. Most folks here don't stop getting tested for anything after the one negative MRI or VEP or whatnot.

Also doctors, in my experience, dont keep looking for MS when they can't find any immediate evidence of it (in fact, it's really unrealistic to expect a doctor to keep pushing for answers in the direction of MS when an MRI and Lumbar come back negative). Most Limbo patients have probably at some point been in the care of, or seen a rheumatologist, physical therapist or an orthopedic surgeon and left liters () of blood for tests at regular intervals.

The core of the limbo-land folks continue looking for answers wherever they may be (answers in or outside of the MS box) mainly because we find it very difficult to get symptom treatment and relief without a diagnosis. (so why on earth would we continue to only ride the "ms bus" when we won't get symptom management without a diagnosis??? The answer is: for many of us we don't. We look into "anything that jumps" as a possible lead to the answers. Because we will most likely get better treatment with a diagnosis. Among other things...

Also some of us really brave Limbo-landers will look into somatization disorders. I would say that certainly for some this may be a good direction to look into. Somatization disorders are very real, but it is also not a "last resort explanation" for undiagnosed patients. Sadly it it is too often used to dismiss or diminish very real health issues. (Btw: it is also my opinion that people suffering from somatization disorders should be treated with respect: they too are fighting a hard battle and should also not be belittled or patronized. It is our cultural approach to mental disorders which lead to so much shame and hence misdiagnosis...)


So we stick around here (an MS site) because of the wonderful support.

Luckily some feedback comes back from others who get a diagnosis (for MS or otherwise).

Thank you Thinkimjob for your sympathy and your respect!!! It is greatly appreciated!
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[Greg]

Well said Lynnepenne. I also being a limbolander understand that there are hundreds of possibilities as to what could be cuasing my sx's. When others ask me what is wrong I tell them it is "like" ms and that it could be a gazillion differt things it is just easier to describe it this way, as opposed to "patient suffers from a cluster of dabilitating nueropathies of unknown idiology." I know a lot of people dont understand ms but most have heard of it. I know for me and most of the limbolanders we identify with the ms sx's and those who are here dx'd and undx'd alike. I personaly pray that I dont have ms or any other of the uncurable dabilitating diseases.

[photomama]

Amen.

I've been tested, retested (and retested) for anything and everything even possible in my seven years of limbo. Believe me, I have become an expert on diseases with symptoms similar to MS (and even some that aren't). *I* didn't stop looking even when my neurologists gave up, I simply found another one to keep the search going. Sometimes I've had to take breaks because the road is long and hard, but eventually I've found I can't give up in the long run.

*I* don't care what I'm diagnosed with- and yes, I even went down the road of taking medications I didn't want to take to make sure it wasn't a somatization disorder (even though the neuropyschs knew it wasn't ). It could end up being *Erin Disease*, some unknown, new disease forever. Who knows?

What I do know is this- I don't have anywhere else to go. And until I do, y'all are stuck with me. My disease walks, talks and acts like MS.... for now. Maybe I am in that rare 5%. Some neuros have told me that, only to retract it later. Some neuros toss their hands up in the air. All have said- looks like MS. All have ruled out anything else.

I truly believe we know nothing- not nearly enough- about the brain, the spine, and the central nervous system. I believe we will look back and say "We thought we knew SO MUCH back then about these diseases".

Hopefully, someday, those of us who wait for answers will find our answers- whatever they are.

[Cat Mom]

Is it ok for a non-limbolander's humble opinion? I was diagnosed MS right from the get-go and I can't imagine how terrifying it would be to experience these symptoms and not FREAK OUT because you don't know why.

It must also be really difficult to even get disability coverage or desperately needed meds paid for when your illness doesn't have a name yet.

Nobody wants the diagnosis of MS but at least knowing what disease I have, I can use my precious energy treating it, not running around to doc offices, labs, clinics and hospitals trying to find out what it is.

My heart goes out to all of you.

[Shashi]

Great post, Lynnepynne!

As you mentioned, I, like other Limbolanders, have been tested for a multitude of things, MS just being one of them. I've had gallons of blood taken over the last six years, had my B12 and Vitamin D tested (B12 was fine, Vit. D was low.) I had a lip biopsy to see if it might be Sjogren's syndrome (and ended up with a permanent numb spot on my bottom lip) and an intestinal biopsy to see if it might be Celiac disease. I've been poked, prodded, squeezed, and scanned. I've seen neurologists, rheumatologists, gastroenterologists, endocrinologists, otorhinolaryngologists, and even had a neuro-psych evaluation. (No to somatization disorder, yes to cognitive problems.) And I've given up.

I may never know what my diagnosis is. All I can do is treat the symptoms and hope they don't get worse. (They've actually gotten a bit better since I've gotten my Vit. D levels up.)

The reason I still come here, to an MS support site, is because the symptoms I have most closely match MS. Plus, most of my doctors still think it's MS, including the neuro-ophthalmologist who diagnosed me with mild optic neuritis. Who knows, maybe someday I'll get a diagnosis (if I ever get another MRI, which is questionable right now.) So, even if it's not MS (and I sincerely hope that it is NOT), I can still get support for the problems I have, and hopefully give a bit of support back to those who need it because I do know what these symptoms feel like.

[Thinkimjob]

Hello, all.
I think what limbolanders go through might even be worse.
I at least know what's wrong with me. I've got some drugs, and I can tell people why I'm sick and tired, because it's got a name.

I was just worried drs might be putting people in the "possible ms" box and leaving you there until something really bad or dramatic happened and they could prove it.

I'm pleased they do check every other angle, although I don't envy you the medical bills.

And I do think this is a great site for limbolanders to come.

Had a teacher who used to say, "if it walks like a duck, looks like a duck and quacks like a duck, there's a pretty good chance it's a duck."