limboland is tiring!

[becky1216]

I guess I dont really have a question, so much as I need to vent! Is it bad to want to take a break from all the tests (that come back negative) and just relax for awhile!?

I feel exhausted from going to the Neuro and explaining symptom after symptom and not having a clue what I actually have (although my symptoms sure do seem like MS)! I feel like taking a break and just keeping a weekly log of my symptoms would be giving up somehow?? Maybe I'm just frustrated from getting so many tests performed and not finding anything wrong! (Ive had CAT scans and MRIs and bloodwork, and Evoked Potentials, and Nerve Conductions....)

Its all so tiring! Any advice for a limbolander like me??

[becky1216]

thank you everyone! It is so helpful to know that people know how I feel. I often feel like I'm going crazy  ( I work in the Mental Health field so I KNOW crazy!!) and its not always helpful when you feel like you are "bothering people" by talking about symptoms.

I do have a very supportive boyfriend, family, and friends, which is what gets me through! I think I just get down when I try to do activities that I used to enjoy and find myself unable to complete some of them..I just get so tired! I've talked to my GP about antidepressants so possibly I'll feel more back to myself once that kicks in! :)

Again, I REALLY appreciate the feedback from everyone!
Becky

[patientnurse]

If I can just say: Everyone here is right on the money! Limboland is emotionally and mentally draining. Not to mention that being undiagnosed with a host of symptoms, the dr may want to send you for a psych exam-which you are only being driven crazy by not knowing what the heck is wrong with you. It's very difficult to answer people when they say "You're still sick? Did they ever figure out what it is?"

If you feel you need to take a break then by all means do so. If you are not mentally able to deal with the back and forth then it will be easy for them to write you off as a psych patient, and you won't be in the best position to advocate for yourself. Which brings me to another point: You are your best advocate, so even though the testing gets exhausting, know that eventually they will run out of tests to do and will have excluded so much that they have to dx you!

Don't give up!

Chanda

[wiggles94]

Hi Becky,
All offer very good words of wisdom regarding being in limbo.

I too am in limbo - was taking meds as my first neuro felt I was possible MS and would convert - but second opinion (MS neuro) wasn't as convinced I have MS - so I am now off meds (took them for a year )  and I've been off them for 6 months.

This whole journey can be overwhelming and exhausting.  But you have to do what feels right to you.  I go in spurts in dealing with it.  But I find there are times when I need to totally get away from it - I too believe that if I have MS - it will become clear - when it's ready.

In the meantime I try to enjoy as much as I can - but listen to my body carefully with regards to rest and working out.  Whatever I have going on has forced me to slow down, and given me time to savor life.  And I have developed a lot of patience.

I try and surround myself with a positive team (both personally and health wise) and am very honest in what I need.  I am working with a compassionate PA now in my neuro's office who is following me - am having follow up MRIs soon - and just knowing that they are looking out for me is reassuring.

Take care and know you're not alone.

[supermum_ms]

Hi becky,

I think everyone at some stage needs a break, I actually think it can be very important for your mental health. If the medical merri-go-round is getting you no closer to your answer and your still living with your sx, then it is always going to be in your best interest to do what feels right for you.

If all your tests are coming out 'normal' then it makes sense to take a break but I would be making sure all the MS mimics are excluded too because sometimes it just isnt MS but one of its mimics instead. Do what you need to do, what feels right to you but what ever you deside, make sure your looking after your self.

Personally i'm a long time limbo lander though MS didn't get onto the radar until 09, all my results are consistent with MS, my dr is 100% possitive its MS and my history and sx are also consistent with MS and yet i'm still in limbo. Sometimes you can get stuck in limbo because the neurologist wouldn't know MS even if your brain had a neon sign pointing the way lol

I am taking a break, I dont doubt i will be dx with MS, actually everyone does, i am so not taking a break because I'm avoiding the dx, lol its just at this moment in time the dx is less important in the grand scheem of life. Having the mental & physical strength necessary to get through it, is from my perspective more important. The dx of MS will eventually become official, the drive just isn't in me to go out and get it and i am ok with that because I also know that one day i will find my drive!

It is more than ok to relax for a while if thats what you want to do but know if it is MS or even one of its mimics it will not go away for want of trying and you will have to find your inner strength to face the merri go round again.

Cheers..........JJ  

[HVAC]

Limbo is frustrating no matter how long you are in it. My GP who started the whole mess during my yearly physical by saying I had something very wrong and needed to see an Neurologist, even said she was sorry she started me down the path. She told me to take a break at one point.

I did not understand that sometimes you have to be followed every six months. I do not go to Specialists normally, or have tests. All the sudden I was going to the Doctors and having all these tests.

I did not even go in complaining of any symptoms. I saw a half a dozen Neurologists in two years. At one point I wrote on the forum that I had had it. If this appointment did not tell me anything I was walking away. I was finally diagnosed.

Limbo was stressful. It is easier with an answer. Some find they have MS something else.

I worried too much about tests. I made myself a neurotic mess. I even had one Neurologist fire me I was so confused and down right angry from the fear.

It may not have been possible but I wish I had not worried as much as I did. Everything worked out in the end.

Alex

[Sidesteps]

Another limbolander here... this path is definitely not for the faint of heart!!

I agree with both these wonderful ladies above me. :) My issue is that I, haven't felt good for nearly a year now, and new symptoms show up that sort of kick me in my butt. I stepped away from it all thinking it might've been a virus and was getting better then the double vision showed up and more vision symptoms, hearing issues and facial pain. Yup, another flare.

It seems to be the way this disease is moving through me. I attempt to go into denial then I relapse or something happens to me and it scares me into action. Currently, I am having hearing fluctuations, increased body movements (twitching, jerking) and as usually my darn visual symptoms are flared so I'm now grateful I scheduled my next appointment with this new doctor in a few weeks.

Like you,  I have just finished a second round of MRI's, VEP and was referred to a Rheumy for their over-view of me but I'm not happy with my Neuro and so I am not going back. I thought of taking a break since I'm so tired but I am more worried than tired so, moving forward, this is what I've decided to do when I feel I need a break. I take them between appointments. :) Most of my appointments are in spurts so I take advantage of it by putting this all on the backburner until something screams at me - like losing my vision or something like that. My next appointment is August 31st and I am waiting on referrals in the mean time but I'm trying to enjoy my summer between.

So, I think you can do both. Try to take care of things you have to take care and schedule the appointments for one day so you are not feeling like you are bouncing all over the place. Once the appointments are made, go into denial, it seems to be working for me so far this last week or so.

[sarahw244]

Hello!  I also can identify with what you are feeling.  It is definately frustrating, to say the least, and this journey is not for the faint of heart.  I, for one, have found something in me that I didn't know I had.  Some kind of inner strength, lol!

I have a little bit different take on what Kerri said; I think if you feel you need a break for awhile, you should take one.  I say this because it DOES get very tiring.  It's easy to start doubting yourself, and while I agree that if it is MS it will progress even without any new outward symptoms, it won't hurt anything if the neuro won't treat you anyways.  Does that make any sense?

Sometimes, you just need to forget all of this and focus on something else for awhile to gain some strength and confidence back.  Maybe wait for some new symptoms, and like you said keep a journal.  Don't take off for too long, though!

This is just my opinion.  I am in limbo myself and have been taking a break most of the summer, until today, but that is a different story.  I wish you luck, and whatever you choose, you have to do what's right for you.  It's your body and your life that this all affects.

Take care,
Sarah

[kerrtelli]

Hello. I completely identify you.  I Hqve had all of the same tests.  Waiting on LP.
Although I have at least 21 lesions in classic areas for ms.  They say they are atypical and not big enough to be ms.

Frustrating.  Having said that,I would say do not give up or take a break.
I felt the same way as you a couple of weeks ago.  

I say don't take. Break because according to a lot of people on the forum, even thou you are not progressing, if it is ms, the disease does progress.

Keep the faith and keep on pushing.  Keep going to doctors until you find one that will listen or give you answers.

Just my two cents.

Kerri