Can anyone make peace with limboland?

[Jennagain]

I am off to the MS clinic tomorrow, but feeling very apprehensive. My husband is so happy as he feels they are the best and most able to give an accurate answer. Unlike me he is so positive and convinced I am going to get an answer.

I am not very positive at all and don't expect to get any answers. I told him not to get to excited as I have been down this road before and never get any answers. Here is the list of crazy, inaccurate things I have been told:

2006 - stiff weak leg, hand tremors, ataxia and balance issues, spastic bladder. Neuro #1 said these symptoms were caused by a Thyroid problem. Test was negative but MRI positive for lesions. Said there was nothing wrong with me and I was healthy.

2007 - MS neuro said it was probably MS, but after a year said it wasn't. She had no idea.

2014 - No exacerbations since 2006 and lived in bliss with no problems until Sept. 2014 when symptoms appeared again - stiff weak leg (same one), pins and needles, weak arm and hand, clumsy hands, bladder problems.

Saw third neuro last week and he says "something is irritating the white matter of your brain". Says it's not MS, could be celiac disease, but not sure.

It's strange, but I am ok with living in limbo. My problems are not horrible and maybe they never will be. I figure if things remit completely I am in good shape and if not hopefully I can live with it. I also figure if things do get really bad the condition I have will be so obvious they will have to find it.

Any other limbolanders who have made peace with their condition?

[CWoods]

Happy for you

Good for you! I try but I have two kids with special needs and my symptoms make it hard to care for them at times. But I know that it could be years before Ithey figure it out. Or maybe it'll just go away.

[Heartshome]

I'm good with it

I have been trying to find an answer for going on 12 years now. Heavy legs, numbness and tingling in both hands and feet. Dropping things, having to concentrate to hold things, hands actually not working, brain that is thick and foggy. Unable to remember words, dates, can no longer follow recipes when cooking. Putting weird things in the fridge, unbelievable fatigue, etc.

Had all the tests, MRIs are clear, but I have hyperactive reflexes and ankle clonus, so my doc is just waiting to see what happens. He thinks it's a very slow to show itself MS.

This drove me nuts for about two years. Then after tons of research I started the Swank diet, along with stress reduction and 1-2 hours of rest lying down every day. It helped me a lot. My "stuff" as I call it, comes and goes. But I'm okay with it now.

If I am never officially diagnosed it's okay. I've found a way to manage my symptoms as best as I can and I just accept what is.

Of course if I get worse that will likely all fly out the window, but for now I'm good.

[JerryD]

I am glad that you have made peace with your 'problems'. I feel that there are neurologic problems that do not have names or detailed descriptions. Therefor, the medical establishment has no idea how to treat them. But I am the type that believes that if there is a problem, there is a solution. If you don't recognize the problem, you will never get a solution.
I believe that if you keep looking for the cause of your problems, and you consult with the best physicians, you will discover the solutions. No one knows your feelings of 'being unwell' as well as you. Keep looking for answers. Good luck

[Marco]

MS will impact each of us differently and it's easier to be "at peace" when symptoms are minimal or well-controlled. With each level of progression, attack or deficit experienced peace may become harder. I'm just not sure anyone can have "peace" while looking at their circumstances. Circumstances change wildly from wonderful to terrible so using them as a guide is difficult, if not impossible. The last stage of the Kubler-Ross grief cycle is acceptance, and not everyone will reach this stage. If you have reached this point then you are doing well. One major problem with MS is you continue to lose function over time. So even if you are done grieving one loss, another loss may be suffered causing the grieving cycle to restart. For me, peace comes from my faith and I would be completely lost without it.

[Elizabeth7]

If it weren't for the cognitive deficits, I think I could be. Being much slower at things than I used to be, having trouble remembering words, and getting confused easily without a diagnosis just makes life too hard. Everyone thinks I'm just stupid or lazy because I have no way to explain to them why I mess so many things up. In school, since I don't have a diagnosis, I don't get any extra time on exams or any other accommodations. If I can't finish an exam or make a bunch of mistakes because I don't have time to sort out my thoughts the way I need to, I just do poorly on the exam. That's really hard for me as someone who had always been a straight A, high achieving student. I've lost several jobs and had several bosses yell at me for being too slow and making too many dumb mistakes. But what am I going to tell them? "I promise I have a health problem making me slower than I used to be even though all 20 doctors I've seen say I don't have any health problems." ...? Maybe some day I'll be at peace with it, but I can't find out how right now.

[Phoenix822]

I can so relate to this.

If it weren't for the cognitive deficits, I think I could be. Being much slower at things than I used to be, having trouble remembering words, and getting confused easily without a diagnosis just makes life too hard. Everyone thinks I'm just stupid or lazy because I have no way to explain to them why I mess so many things up.

If I only experienced my physical effects (numbness, etc), I think I'd make peace with it and just muddle through. But the cognitive effects, which have increased noticeably for me over the last two years, are frightening. I know that everyone gets slower and dumber with age but I believe what I'm experiencing goes well beyond normal aging process. Some days the brain fog is so intense that language stops making sense to me altogether. I can't read. I can't follow a spoken sentence from beginning to end. I feel your pain. Hang in there.