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Multiple Sclerosis Community
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405614 tn?1329147714

Too much in Limbo; time to give up?

I updated my timeline and opened it to public view.  I want to know if I should keep pushing for answers, trying to find a new neurologist, trying to get a new 3 Tesla MRI of my brain.

I am so tired and off-balance, I'm losing my energy to pursue anything and sometime just feel like curling up into a ball.  I'm going to see a surgeon about my hip labral tear, but am worried about surgery and lack of balance; will I be able to navigate on crutches?

Brief recap; I had a brain MRI Feb. 22nd of this year, which showed "multiple mm area sized of increased and abnormal water signal scattered throughout supratentorial white matter tracts.  The appearance and distribution of these lesions is far and away most consistent with multiple sclerosis".  First neuro disagreed, contacted neuro radiologist who said he stands by his findings.

Second neuro; LP, blood tests, Western Blot for Lyme all came back negative.  She ordered spine MRIs, although she told me she was sure I didn't have MS.  Her chart notes say "there is a long "abn" in T-spine.  It appears to be an artifact on saggital, not well seen on axial", and that she had told me that it appears to be an artifact but can't be absolutely sure.  She told me it was nothing, just an artifact, even when I showed her similar patchy area on 3 Tesla thoracic MRI from a year before.  She said "I won't even comment on that, it's nothing".  She said I don't have MS and don't need any further neurological workup

My PCP is very supportive, is now convinced that I don't have MS, but is still willing to help me look for answers.  She doesn't want to send me for any tests that might have anything to do with MS, like a VNG after my weird vision event.  Supports me going to see a neurologist at OHSU, not MS specialist.  I picked one that a fellow forum member told me about, who works with the MS clinic, but now I have to wait and see if she will accept me as a patient.

I know I can't quit, but how do I find the energy to go on?  Which way do I go?

Floating along in a very wobbly boat through LimboLand,  looking for a hand,

Kathy

12 Responses
Avatar universal
Just keep looking.  And yes go to another neuro.  I am in limboland as well.  I also have wanted to give up, especially when I start to feel better.  But my husband keeps reminding me that we both know that it is going to come back and usually worse than the last time.  He is what keeps me searching. I am grateful for his support.

You know your body, something is definetly wrong.  Sometimes though it does not hurt to take a break from all the tests for a little while.  If you need a break take it, just don't give up altogether. Come back and keep searching.  It looks like you have a supportive PCP so at least she will help.  Good luck on the new neuro.
Tahiri
405614 tn?1329147714
Thank you for your support.  I don't mind the tests, just the lack of clear answers!  :o)

My closest support network have big problems of their own, and I would feel very alone right now if not for this community.  I'm pretty self-sufficient and good at advocating for myself, but I'm worn out.  

Reading about other people's struggles, strengths, successes and caring concern for others is encouraging, even when it's tough to type 'cause my hands are shaky and to read because my vision is a little blurry, a little jittery.

I'm also reminded that I could have things a lot worse.

Thanks, Tahiri, and everyone else, for being here.

Kathy

I think I forgot to mention that my timeline is in my journal, if anyone is interested in looking at it.

393986 tn?1303829575
You musn't ever give up on yourself or your quest for answers.  I would give you all my strength in a heartbeat in this fight for a correct diagnosis.  I know the road of Limbo is a hard one and it is not for the fair hearted.  But hang in there, Sweetie.  The important thing is you know something is wrong, always believe in yourself and never give up, the LimboMonster is always on the side of the road waiting to suck you in the depths of despair.  I have had to slay many a monster in my battle.  But in the end when you get the diagnosis that makes sense, the relief you will feel is one of the best feelings you will ever feel, I want that feeling for you.  I want it for everybody.  A couple of good things about Limbo is it will make you a stronger person, you meet some really great friends, and it will make you a great advocate about your health care.

I am rooting for you all the way, Kathy!!!!  I am sending you many, many, cyber hugs!!!

Love,

Ada
506846 tn?1217269561
Don't you give up Girl!!

I know it is tiring but you need to keep on pushing for answers.  I also know giving up seems like the best answer when you have no energy left to move further. I have been there, but giving up is to easy!!

We are all here for you good days and bad days.
Don't give up hope that there is a answer out there, because there is!  I know there is!!

Hugs,
Aura
405614 tn?1329147714
Thanks a lot Ada, you made me cry!  Honestly, I really needed a good cry.

Thank you so much; I've heard of a few of the monster's you've slain, and if you have the energy left to encourage me to keep fighting, then I'd better raise up my sword and head back into battle!  Wow, strength like yours multiplies so that you can share it with others.

Oh, I was just looking at the picture of your children while you wrote to me (interesting coincidence) and they are indeed beautiful.

feeling the love,

Kathy
405614 tn?1329147714
Hugs back at ya', gal.  I'm so glad you were here to help pick me up when I was really dragging through the muck.

Kathy
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