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Saying Good Bye and Thanks

Feb 04, 2011 - 23 comments

I guess it's time for me to leave this forum. I don't belong here anymore as I am now totally classified as a permanent limbo lander. There is no forum for that and there is no advice I can give anyone anymore as I have myself have nowhere left to go. Even for limbo landers looking, I have nothing left to offer.

The following is what has recently happened that has led me to this decision.

I got a call finally a month later (after my last voice issue) from my family doc's office and the nurse told me that no new neuro will take me on. They say that there is nothing more they can do for me or test me for and for me to go back to the other neuro who sent me to the MS clinic. She told me unless I become paralyzed or something similar in severity, that would be the only way they would take me on.

The problem with going back to the neuro I had is that he no longer wants to see me either as he was sure I had MS and after the MS clinic said no, he basically told me that I'm not that bad off as I'm still walking so not to worry about things. He's also the one that told my family doc after a bad flare that I needed a psyche eval and not treatment.

I did go for the eval just to get that off the table and guess what? There is nothing psychologically wrong with me and nothing that would be causing these symptoms. Go figure.

Anyways, my family doc has gone from telling me when I first saw him a little over a year ago that he would do anything and everything to help me, has basically written me off as well and says there is nothing more he can do. I was the one who lately had to push for him to see if he could find someone to see me and when asking him about seeing an ENT for my recent voice issues said it wasn't worth it as they wouldn't find anything anyways. So I am now left in the dark and nowhere left to go as here in Canada, to see anyone, you need your family doc to refer you.

I can't thank everyone enough for these last few years supporting me and helping me through some scary days. This is an incredible place and I will always think of you as my second family but it's time for me to say goodbye. I wish you all well and pray that cure for MS is just around the corner. Through you all, I have learned so much about this disease and have learned how silent symptoms can be just as debilitating as the visual ones.

I send you all my love and only wish happiness and good health for you.

Moki



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739070 tn?1338603402
by rendean, Feb 04, 2011
Dear Moki,

Please do not leave the forum, you DO belong here. Your medical dx is not a requirement to stay. You have a compassionate heart and it shows through when you answer a post. It doesn't matter if you are in limbo , you aren't allowed to leave. Remember the mob rules: once a member, always a member.

We here to support you as you wait for your diagnosis and/or stay in limbo. You have symptoms of MS correct? So why would you want to leave? We even have summerlover stay and she has myeloma. We support her just as we will support you.

Is there any way to change family docs? I don't know you history very well except that you have been here a long time and I know that you were here in the infancy of this forum. Your experience in reading posts and knowing when to add that compassionate post is invaluable. I know you have posted on some of mine and I found your post to be on point and kind.

Please reconsider!!!!!!!!!!

Ren

198419 tn?1360242356
by sllowe, Feb 04, 2011
Can I say f ing jerks here on your journal! They just are - it's horrible.

Moki - I don't know what to say. But, please don't leave. You have not been in the best of care and I'll never understand docs that practice this way. It's in the states and abrouad. Let us be your hope for now - you need all the energy you can get to get through your days. I'm sure nothing I or we say can make you feel better.

But please, please know that we are here and we care very deeply.
Love you,
Shell

198419 tn?1360242356
by sllowe, Feb 04, 2011
that's abroad, not a broad, or brouad

I have 2nd thoughts too. A letter is in order. One that lists your lesions, your issues, etc., and it needs to be sent to Canada's regulatory authorities, or whatever they call them there. I'm serious - it's malpractice.

572651 tn?1530999357
by Lulu54, Feb 04, 2011
M,
So the doctors have given up on you and now you've decided to give up, too?  Well guess what... we're not the quitting types here.  If Quix were here I'm sure she would make it unanimous.  You think you can leave, but I know you'll be peaking in on us.  

You add a lot to the conversations here - and we value you limbolanders - it is atotally different persepctive than any of us can offer.

So please, reconsider t hat resignation.  Your time to quit us hasn't come, yet.  


lots of hugs, Laura

PS could this be the SADD from the long winter days affecting your thinking?  I know those doctors are really f#$#$ed with your care  and it doesn't help your mental state  - yes, there are lots of reasons to be depressed with how you have been treated.

more hugs, L

Avatar universal
by essdipity, Feb 04, 2011
Mokster, maybe you just need a vacation from thoughts of MS. That happens to so many of us, and it can be a good thing. Clear your head and think visions of springtime. It's not all that far away.

When you're ready, come back and tell us how you are and what plans you might have to attack this problem anew. Is there a possibility you could have a consultation in the US?

Meanwhile, hugs to you, and happy thoughts,

ess

Avatar universal
by tess533, Feb 04, 2011
mokster thats so sad please dont leave im in limbo and been bounced around too so we all need each other here who else will listen to us so stay with it something will happen to us or maybe it wont but for now your need here x

1168938 tn?1327154232
by suzsibs, Feb 05, 2011
Hi
Neuro's gave up on me recently and I have been very depressed at the lack of care and help for the undiagnosed. Like you I have felt like giving up and going solo...but decided that I have made friends here and I don't want to leave them in limboland alone :o)
They are a great help to me and very supportive, I have been in limboland with no diagnosis for 4 years now, I have spinal and reflex myoclonus and neuro has told me he can't find a cause and there is no cure! Like you I could get another referral but at this moment in time the fight has gone out of me...it WILL return, so please don't give up, there are people here who will miss you and your input.
Big hugs
Suz

279234 tn?1363105249
by slightlybroken, Feb 05, 2011
Moki,

Please reconsider...Take a break if you need to, but you need the support system especially since you are a limbolander. We don't become unmembers in this group because our doctors can't see, or because our diagnosis isn't given in a timely manner. Remember Mob Rules!

I know it's disheartening. I'm there with you.

If Quix was here, you wouldn't be getting away with this leaving talk. Yep I went there. I would tell on you..and Momma Quix would come after you, racoons and all. She would give you a good talking to.LOL.

We wish the best for you..but know that you are loved and your not alone.. okay. Take a break and come back when you are ready.

147426 tn?1317265632
by Quixotic1, Feb 05, 2011
Moki, Moki, Moki, Moki, dearest - You may not and must not leave!  We will all risk life, limb and frostbite to hunt you down and bring you back.  Remember all the times you enforced the Mob Family Rules on other people!  For each of those times you must stay another year.  Remember when you leave you leave holes in people's hearts, mine especially.  I know that being here keeps the uncertainty of your diagnosis up front in your mind, but you must'nt through your importance out just because some jerks up there do.  We cherish you and I would forever feel bereft if you were not a part of this family.

Taking a break is okay - it has to be because I'm on one, but belong you do and will always.  

Please the applicable box:

__ I am not leaving

__ I will not leave

__ I know I am loved and that dozens of people care intensely about my well-being, so I will not leave

__ I am not going anywhere, but may take a break

__ I will stay with my friends.

Moki, I am so sorry that doctors are trying to remove hope.  I remember that you and I were talking about a plan.  Let's look back at it and see what we can do.

Much love to our Moki Bear

Mama Bear

1312898 tn?1314568133
by RedFlame, Feb 05, 2011
Please don't leave!  I know you are fed up, demoralized, discouraged, humiliated and otherwise face down on the floor.  

It's THEM not you Moki!  They are the ones who are quitting and giving up---shame on them!  They are the ones that should be helping you.  The comment "they aren't going to find anything anyway" is a statement of an emotionally bankrupt person.  The fact that they don't know what to do is a reflection of them not you.  

Please don't internalize their 'stuff' like this.  You have so much more strength than they do.  

I think you should quit them.

You are an important part of our community

Red

Avatar universal
by SarahL2491, Feb 05, 2011
Moki

please do not leave us..........we all need each other and you are not alone; I'm on the "hit list" of 1 rheumo, 2 neuro and 3 family docs so far!  Move over, you have company

Now we "wait and see" but don't throw us out with the bath water........waaaaaaaaaaaaaaaaaaaaaugh

pls

Sarah

281565 tn?1295982683
by mokibear, Feb 06, 2011
Dear All,

I'm overwhelmed with the responses to my leaving and it has brought tears to my eyes once again on how caring this community is.

When I wrote this journal, I was consumed with anger, frustration and despair. For the first time ever on my journey for a diagnosis, I truly felt that there will be no answer and that I will be forever a limbo lander. I wondered and still wonder how do I give advice or support to another limbo lander when I've been stopped dead in my tracks? To tell someone not to give up the fight and to keep looking is not easy for me now as I have been forced at this time to stop. I want to support the undiagnosed as I know and understand after 5 years of my own battle, how hard it is to keep going.

My endless support for those diagnosed will never change but again, how do I ask you about new symptoms I get when I've got no where to go with your answers?

I am still full of the above mentioned feelings and not sure where to put those feeling or how to deal with them at this point, which is sad being that I've been studying for counseling. lol I think I just got blindsided by this turn of events and it sort of put me in a tail spin.

So having said all that and thank you for bearing with me till now, I guess I need to face up to the Mob rules. Ah yes, those wonderful Mob rules that dearest Quix reminded me of instilling so often on others. Funny how we can forget those things. lol So to the following:
Please check the applicable box: Using x as yes as I don't know how to do a check mark. lol

_x_ I am not leaving

_x_ I will not leave

_x_ I know I am loved and that dozens of people care intensely about my well-being, so I will not leave

_x_ I am not going anywhere, but may take a break

_x_ I will stay with my friends.

Thank you all for your kindness, support, love and hugs. I have been so blessed to have found this forum over 3 years ago.

Now I must try to sort through what's happened and try to get a perspective on it. I am not sure where to start but know that shutting down and pretending that my health problems don't exist is not the answer.

Again, THANK YOU ALL, you will never know how much your kind words have meant to me.

Love and hugs
Moki

572651 tn?1530999357
by Lulu54, Feb 06, 2011
:-)

lots of hugs, L

Avatar universal
by lpt7131, Feb 06, 2011
Moki,
It's true, it is so hard...it's been, now that I look back, 15 or more years trying to track down things.  Sometimes, as soon as you stop looking, the answer appears right in your path.  Don't leave...just be in the present...
Take care,
LPT

611606 tn?1315517767
by ShadowsSister, Feb 06, 2011
Hi Sweet Lady,
Reading your post broke my heart, for you to feel so alone hurts. I am so sorry you having been going through all this crazy stuff. But you can't leave us, you are so needed and wanted by so many of us. I know I haven't been around very much this past year, and that's so wrong of me.
You were so supportive of me when I was going through crap in California, you will never know how much you helped me get through some dark times.
Moki, please hang in there and stay in touch, we don't care what the Dr. say, you are a part of our group, so you can't leave, you are wanted and needed..
I am here for you and so are so many others , please don't give up on yourself or us...
Love and Hugs daily coming your way..{{{{{{~!~}}}}} DJ

739070 tn?1338603402
by rendean, Feb 06, 2011
Dear Moki,

Lets try this a second time. I'm glad you decided to stay. The thought of Quix hunting you down with knitting needles in her hand and racoons trailing behind was an aamusing visual but I prefer that doesn't have to happen.

Take a break and come back when you are ready. I was in limbo for 5 years and I understand the frustation and anger at stupid doctors who have their minds made up before they even enter the room. I went through 5 neuros befire one was willing to call a duck a duck and dx me. There is still hope and the RIGHT doc out there for you , you just need to find him. Word of mouth is a great was to do this. Try calling your MS society and see if they have alist of neuro in your area.

Hugs,
Ren  

667078 tn?1316000935
by HVAC, Feb 06, 2011
I find that when I can't take my anger out on the medical profession I tend to turn it in on myself. I have hurt myself when I wanted to hurt the screwed up system. After years of horrible misdiagnoses I was ready to give up. My care under a Neurologist is not so good even after diagnosis, but I do have one caring Doctor totally behind me. If I had given up I would not have the support I have now. We would sorely miss you.

Lean out the window and scream I am mad as hell and I am not going to take it anymore. But please stay.

Alex

281565 tn?1295982683
by mokibear, Feb 06, 2011
This truly is an amazing place, filled with incredible warm,caring people and I am so fortunate to be part of that. I guess for a while I forgot that. I can't thank you all enough for being here for me and making me feel cared about. After being shut down by the almighty neuros, I guess I figured I wasn't much worth caring about. Yup, pity party city. But you have all stepped up and made me feel a part of something great.

LPT, I've had issues about just as long as you but things didn't escalate until about 5 years ago which started me on a hard search. I thank you for your response and will try to remain in the present.

DJ, my dear sweet friend. You have no need to apologize for not being on here much this last year as your plate was more then overflowing. When you did come on, as always it was filled with care and concern for others just as you are doing now with me. You too helped me through some dark times so I believe we are even on that score. I am staying DJ, I promise. You just focus on you now and your upcoming test and know that my thoughts and prayers are with you.

Ren, thank you for the visual, as much as it makes me chuckle, I would hate to be on the receiving end if Quix got hold of me and had to endure frostbite to do it. A knitting needle placed in a certain place would not be too much fun.

I wish things were different here but even with a list of neuros from the MS Society, I need the referral and my file follows. The last MS specialist declared that I do not have MS and that he believes I have something new. Now no one wants to bother with me as I appear to be too much work. I need to figure out a different angle but just not sure what yet.

Alex, thank you for your understanding in this. I forgot how many others have struggled as hard. You are right and I am mad and think I will do as you say. Good thing the neighbors live far enough away. lol

I'm going to take a bit of time and try to come to terms with all of this. I may be asking for your opinions on a few things I have had tossing in my brain today but I need to just take a bit of a breather first. I'm not leaving, just going to get a perspective on things and then I'll be back.

Love and hugs
Moki


559187 tn?1330782856
by Sarahsmom46, Feb 06, 2011
Moki,

So you are going to stay. That is fantastic.  You probably don't know me, but I know you and have always been happy when I saw you post.  

We all come to groups for various reasons, mostly that we have something in common with the members.  I joined a group several years ago and even thought I later found out that I didin't have the same illness they had, I stuck around because we had some much else in common otherwise and could share experiences and how we coped with the health issues.  That is the tie that binds you all even if you don't have the same disease.  

Again, it is good to see that you will still be hanging out with us.  We are all in this together after all.  

Hugs,

Julie (Sarahsmom)

281565 tn?1295982683
by mokibear, Feb 07, 2011
Julie, Of course I know you and I always have enjoyed your posts. You have always been helpful and supportive to everyone and a great asset to this forum.

Your comments are so true and I do appreciate it. I can't see a better group to "hang out" with then this one. Thanks, Julie.

Hugs
Moki

1168938 tn?1327154232
by suzsibs, Feb 08, 2011
Just checking in to see if you were staying with us....and after all the above messages I guess it would be hard to leave now, it's nice to be wanted :o)

I've got visions of Quix with her knickers round her ankles and a cat hanging on to a ball of wool chasing you down the street and dragging you back by the scruff of your neck...now how could you live without these adventures going on here in limboland ;o)

Just think what you would be missing.

Glad to have made your acquaintance...maybe we will become friends now, we can all use a new friend :o)
Hugs
Suz



Avatar universal
by Udkas, Feb 08, 2011
Hey Moki,
You can't leave, you have been on here for such a long time, so glad you are staying, you have so much to offer others.  I can relate to your frustration.

Hugs Udkas.

Avatar universal
by essdipity, Feb 08, 2011
  Suz---

I love your visions!

Also love it when Britishisms are used. I'm an Anglophile from way back (mostly due to reading habits), and find the idea of 'knickers' quite a hoot. I know that's standard usage in the UK, but in the US we call them 'panties,' or maybe just 'underpants' (my choice). Knickers, though, are so much easier to get into a twist!

:-)   :-)  :-)  :-)  :-)  :-)

ess

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