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Limbo -- How Low Can You Go?
Bette Davis is credited with the somewhat famous and straight-forward quote, “Old age ain’t for sissies!” You can picture bawdy Bette taking a drag of a cigarette and puffing out these very sage words, hand on hip, with brash confidence. Well, the same can be said for Limboland, this netherworld some of us are stuck far too long in on the journey toward diagnosis. Being stuck in Limbo is frustrating on many levels. It can drain your soul, sap your personality and interfere with relationships when you’re already not feeling well. It most definitely ‘ain’t for sissies.’
Limboland, as we affectionately refer to it here on this forum is where you feel effectively dumped when you don’t have a diagnosis, even though you know something is wrong with your body. Either your doctor feels your symptoms and signs don’t fit any particular condition, or you don’t meet enough criteria for MS, or your doctor wants to ‘wait things out’ to see what is brewing. You can also end up in Limbo when your doctor simply doesn’t believe you when describing your symptoms, or if the doctor feels that stress and anxiety are the root cause of your troubles, and may even recommend psychiatric evaluation (happened to me!). Any way you land here, it’s frustrating and painful.
One of the frustrating things about residing in Limboland is that our desire for diagnosis is often misunderstood by those around us. Doctors, spouses, parents, siblings, children and friends want us to be healthy, happy and well. There's no doubting that! When we know there is something terribly wrong with our bodies (after all we know ourselves better than anyone), and we go to sometimes great lengths to get SOME diagnosis, it is often misconstrued by our loved ones to mean that we 'want something to be wrong.' Who would want that? It is rather because we want to 'know' what is wrong so that we can begin treatment. Who wouldn't want that?
There are also times when some may need time off from work due to severe symptoms or hospitalization. This happened to me last May, when I was hospitalized due to severe paraperesis. Although the hospital staff doctors were considering MS, my neuro ended up chalking it up to complex migraines. This 'migraine' diagnosis was NOT going to fly at work, with me missing a week. But I couldn't walk...
Having health issues with no diagnosis can have a huge impact at the workplace. Being unwell can affect how well you perform at your place of work. If you’re suffering cognitive deficits or pain issues or severe fatigue or weakness, your performance at work is most likely going to be affected. And someone’s bound to notice. Having no diagnosis is very, very tough in these circumstances. You know something is physically wrong, medically wrong, but it’s difficult to forge on if you can’t say, “I’m sorry, it’s the symptoms of my MS, or my disease.” If you have no answer, it’s hard to pin the blame on a "nameless illness" for someone you know won’t likely understand.
Or, your co-worker or boss may bring it up, which would be awful! “I’ve been noticing, Gertrude, that you’ve been putting the blue square pegs into the green round holes. That’s not at all like you. What’s up?” Without a cut-and-dried answer, you could trip all over yourself and say, “Well, it’s my opinion that I have an organic cognitive problem which stems from a demyelinating disease which also causes dysmetria, but my doctor thinks I’m crazy.” Doesn’t exactly flow trippingly off the tongue. Without a name for what is causing your symptoms, or poor performance, things can get messy.
There are other problems in Limbo. To have symptoms be so very apparent to you, to have your body betray in ways that are so obvious, and then to have no doctor agree that anything is even wrong is intensely frustrating, to put it mildly. Some of Limbolanders experience changes suddenly and it can feel like the rug has been pulled out from under us. Like a switch has been tripped and there’s no way to switch back, as much as we’d LOVE for things to return to ‘normal.’ It is so obvious to us, because we are the ones experiencing this and know our bodies the best. On the other hand, we have a ‘medical expert’ who is telling us our tests are coming out normal, and accept these changes as the ‘new you. Or worse, that ‘nothing appears to be wrong with you.’
Others may experience changes more gradually, over years, noticing finally, that things just aren’t right. I’ve changed. I’m not the same person I used to be. “I remember when I used to be able to exercise regularly and with greater ease, and now I drag my leg behind me, and never feel I have the energy to get out of bed.” Doctors may use the aging process or depression as an excuse to dismiss someone in this case.
Either way you come to the changes that make you seek medical attention, only to be dismissed by a doctor can lead to the same result: Self-doubt. And that itself is painful.
It's hard enough to hear from your loved ones that you should move on, get physically fitter and stop obsessing about your health. That hurts enough. But when you have been sure that something is wrong and a doctor convinces you otherwise, or you just give up hope of figuring things out, the self-doubt that creeps in can just crush you. That "I told you so" reverberating in your hollow shell is devastating. It ain't for sissies
There is hope. The community we have nurtured on the forum is a great place to start. There is no support quite like that from someone who's been there. An MS diagnosis is OFTEN hard and long to come by, so many on he forum here understand, and have walked in our shoes.
A trip to a psychiatrist is never a bad idea! This may seem like you're admitting your problems are psychogenic, but I really think seeing a psychiatrist will work to your advantage, like it did for me. One neurologist I saw referred me to a psychiatrist, thinking I was either faking, or I had conversion disorder. So I went! I thought that if my emotional state was keeping my legs from working, I'd BETTER see a psychiatrist!
The psychiatrist was wonderful, and told me that although I did suffer from some anxiety, he concluded it was caused by my health issues, not the other way around. He also said the neurologist had NOT done enough testing, and he wanted me to keep pursuing a diagnosis, as he was concerned about MS. Psychiatrists and neurologists are certified by the same medical board, and have a lot of the same training and education.
It can't do anything but help to see a psychiatrist. When I went to my next neurologist, it meant a lot to him that I'd gone to a psychiatrist; that I'd been open to the idea that it was at least possible this was all in my head. (There's certainly no shame in that!) And it took conversion disorder off the table immediately, and we could move on to organic causes for my symptoms.
If a psychiatrist thinks you should indeed seek a diagnosis, seek it! As we know, early intervention is very important in MS treatment. If you can get disease modifying drugs (DMDs) early, you can slow the progression of the disease sooner. But also, be open to what a psychiatrist tells you. If they feel that anxiety could be the cause of your problems, try to be honest with yourself about that, too. Give it some time to sink in and
Also, I think, as difficult as it may seem, it is a great idea to take a break from testing and doctor visits for six months if nothing is showing up in the present tests. Constantly going to the doctor with complaints and demanding answers is not going to do any good. I am taking a break right now, mostly out of frustration, I must admit. I have just had a second episode of severe weakness, and I just cannot take another normal test result. So, I am going to wait until after the first of next year, and go for a check up then, and see what my exam looks like then.
more to come......