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420469 tn?1217647363

Thank you...and....

I wanted to take a couple of moments here to thank you for all the advice, insight and thoughts that you've offered over the last several months. I've made some wonderful friends here, and learned a ton.

With that being said, I feel it's my time to leave. I find myself being in a position where no one seems to understand my symptoms, nor can offer any insight or advice, which leaves me feeling more "out there" in "medical mysterysville".  I figure, if you guys don't understand it, then other people, who aren't ill, never will.

I've learned so much from you all. I thank you for that. I'm a firm believer that a little knowledge is a very powerful thing.

But I think I've reached a point where I have nothing to offer anyone here, and where whatever illness I have, is putting me in a place where I feel like no one has information or insight for me, leaving me frustrated and upset. When I come here, and I read all about the un-dx with 'classic' symptoms, I feel so discouraged. If people with 'classic' disease (including lesions) can't get a diagnosis, what hope do I have?

Thank you all again, for all you've given me over the last several months, it's information that I will keep with me, and will, if nothing else, help me understand the life my friends who have MS live.

Christine
(un-dx)
11 Responses
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495035 tn?1221753092
Hey hunny stick in here with us...i'm writting this and I wanna be sick really... this forum is the best forum i found altho only been here a dshort time. I dont have a diag either like many of us ...and yes WE DO UNDERSTAND, ...stick with us...tell you what i have only 3 diags to stick with and i dont want any of them....MS, stroke,and Brain T, so we are all alike.so hang in there sweetie :)

hugs
CJ :)
Helpful - 0
335728 tn?1331414412
Hi Honey...I hate to say it but I do know how you feel.  I am between a rock and a hard place and the poor people on here don't know what to do with me anymore either and there are times when I feel VERY alone because I don't fit in with everyone elses "symptoms" and I am neither in limbo land but apparently my MS is in-active so I don't really FIT anywhere either!

I am so sorry that you feel as though you are left alone but I know that no one EVER set out to make you feel that way.  I have been negligent in not returning your last message but it seems ...no I am not going to make excuses, I am purely negligent and for that I do apologize sweetie.

Please don't leave this place though...we do need you here and I for one sincerely appreciate the assistance and support that you have given me in particular.  You do realize that we are a minority here being from Western Canada?  Let's see...we have db, Wobbly, Me and Christine...I think we have to stick together don't you?  I don't know if you noticed but db sent me some invaluable information about the possibility of a new neuro/optho clinic opening here in the city!  I would have had no idea about that if she didn't know that I was living in the same province would I?  You have also offered me several option ideas to help me when I am frustrated and for that I am very grateful.

I guess what I want to do is apologize for leaving you out of the loop and not responding to your messages the way I should.  I promise that I will make a better effort to stay in touch and I sincerely hope that you will not leave our forum.  You are a valuable and trusted friend that I personally don't want to lose.

Love ya,

Rena
Helpful - 0
405614 tn?1329144114
What you are writing sounds so familiar to me.  I have sunk into the same morass a couple of times, the most recent when my doctor put me on beta blockers for my tremors.  

I felt I was sinking into nowhere with no one to understand or hear me.  My sx got so much worse, I was running into walls, head spinning, pain , blurry vision, no way out.  I felt like my PCP was just throwing drugs at me and had no idea what else to do, that my first two neuros thought I was either a headcase looking for attention, or my symptoms were a result of something I HAD DONE TO MYSELF AND THEREFORE DESERVED THEM.

I felt like no one here could understand, because they all had their own lives, issues, friendships, and I was dying inside, hopeless. I would read posts because they had pulled me out of a funk in the past, but I was whirly-headed and felt like I didn't belong.  I checked out the neurology forum, arthritis forum, others, but nothing helped.

I posted about how I was feeling and got back sweet posts telling me to hang in there, that I would find a new neuro, that I was cared for, but I was stuck.

Then I figured out that my symptoms were exacerbated by the new drug, and stopped taking it (I was at a low dose so it was safe to do), wrote my doctor a letter, posted it in my journal, and the love and support here on this forum started getting through to me.  

I talked to my doctor with a friend present, and it was a very good visit; she believes in me, feels bad about my bad experience with neuros, and hopes I find help and was hoping she could help with my tremors with the beta blocker, and the side effects I experienced were rare (I still think "not so for one who is already experiencing those feelings"!

Take my hand, and pull yourself out of that world where you feel so alone and that no one understands you or what you are going through.  Of course, I can't feel what you are feeling, but I can care about what you are feeling, and hope that it stops, or that you find the right doctor with the right answers.

I can't always be there when you need me, but when I'm able, I will respond with my full attention and caring.  Please, if I and others miss what you're saying, bump it up.  We don't want to miss you, leave you out.  I for one feel like I'm accomplishing something with my sorry-*** life when I can be there for someone else.

Please don't leave.  Ride out your storm with us.  How long ago did you quit the Lyrica?  That could have some lasting effects on how you're feeling.

We are like the island of misfit toys; no two truly alike, but all very valuable and can get a heck of a lot done.

With caring concern,

Your friend,

Kathy
Helpful - 0
198419 tn?1360242356
It's okay to "feel" this way, promise.  To let us know about it is also okay.

Sometimes you can have everyone around you but still feel quite alienated, this is understood by all of us.  

You are bombared with it all at the same time and then it varies from symptom to symptom.  Then you get one licked and it gets replaced by something else.  It's a viscious cycle, really.  So very difficult.

When you are ready.  Lets talk plan.  Once some of this subsides, you get some of your fight back, say the word, and we'll move in to help you with an action plan! k?

ttys,
SL
Helpful - 0
420469 tn?1217647363
Thank you all so much for your sweet, kind, caring words. You all are truley angels here, chalked full of compassion, understanding, and warmth.

I'm feeling in a bad place the last few days (off an on). I'm in a "flare", which for me means a revolving door of bizarre symptoms. My throat's being tempermental again (I actually choked twice the other day, putting me in a position where I am afraid to eat if no one else is around because of my kids), my ribs hurt, my left leg is killing me with a constant shock like feeling, I had to stop taking my neurontin because of the vertigo it caused, and have no other pain medication at all. I've been having bad weird dreams (usually only remember dreams when I am getting sick, I think these may be as a result of pain while I'm sleeping), the urinary problems seem to just be starting to pick up again, my neck's been in mild spasm for a week or so, and I know that it's likely that when I see my doctor tomorrow (my 'back up' who thinks I have early MS) there will likely be not too much he can offer (aside from Lyrica, or another nerve pain med).  I feel like I spend 6 mos of the year getting my @ss kicked, to feel decent for a couple of weeks or a month and then get another 3 or 4 months of @ss kicking.

I say "revolving door of symptoms" because it seems, when I flare, that I have 2 or 3 symptoms for anywhere from 2-6 weeks (the average being around 4 weeks), and as 1 symptom settles down, and starts to fade away, another takes it's place. The tingling I have is short lived when I have it (a few hours?), my "numbness" isn't even numbness, it's just an odd sensation (like when you hang your feet into hot water for a while, afterwards they feel numb without being numb).

I don't know why I am rambling on about this. I am so lost and confused and tired of not even knowing where I fit in. I do know this disease has a HUGE variety of symptoms, and that no one is the same, but when no one can relate to your symptoms on a board of this many, then you have to start assuming that maybe you're in the wrong place.

I'm so sorry for ranting/whining here. I am just feeling so terribly alone right now. I mean, I have the amazing love and support of my husband, he knows the pain/discomfort I have, he sees my limitations and helps where he can, but I know he doesn't TRULEY get how I feel, since he was so young when he got sick, and he got sick so quickly. I know people likely think I am depressed, for the most part I'm not, I'm just....tired. It's not a matter of being sick that gets me down though. I've learned to adjust to that, it's been almost 3 years now, and I'm getting used to my new norm. It's not knowing with what, not having ANY clue what to expect for my future (even if it's expecting a life full of relapses and the unexpected, at least I could live prepared for that).

I don't want to leave you all, but I don't know what to do. I feel waaaaaay out in left field completely on my own. I don't want to sound like you guys haven't offered my anything useful, or that you're alienating me, or whatever, that's not what I am trying to say. I just find it hard to be out here with no input, advise or ideas. I hate doing back to the doctor. I hate complaining at all, to you, to the Dr., to my husband. Honestly I get jealous seeing all the testing you all go for (EMG, repeat MRI, Evoked Potentials), and I am stuck between 1 doc who thinks he knows that's wrong, but says we just have to wait it out (for MRI evidence) and one doctor who has no clue what's going on and says we have to just take a "wait and see" approach. It's frustrating and upsetting. Now, I could try and find another doctor who's willing to be more aggressive in their search for answers, but there are risks and downfalls to that too:

1) I could find a doc who think's it's 'all in my head', at least right now both of my doctors believe me
2) Even if I find a doctor who's aggressively seeking answers, it would mean seeing a Neurologist, which I have done twice so far, and been sent along my merry way.

Really, the entire point of this letter is that I am LOST, I don't know where I fit in, no one, ANYWHERE seems to have any ideas, thoughts, input or advice. I feel like I don't belong anywhere, and like no one can relate. I know that can't be true but that's how it feels.....

I'm sorry for my rant here. I am just completely overwhelmed right now.

Thank you all so much for your kind words. You all do so many wonderful things for the people who come here, lost and confused, and scared.

I'll try to stick around for a while ok? I can't make any promises, but I'll try. I'm just so completely discouraged.

Christine
(un-dx)
Helpful - 0
198419 tn?1360242356
Nut uh Missy!  Oh no you don't!

Come oooonnnn - stay with us.  You gonna make me whine - it's early and I shouldn't be whining 1st thing in the a.m.  

What would we be if we didn't have such a garden variety of ailments? We'd be all washed up, discussing and beating up the same things over, and over, and over....What would we be w/out our unique and sometimes similiar problems?  We'd be cookie cutters or something! Yuck! Where is the creativity in that???  It really IS what makes us so diverse!

No 2 people with this disease, are the same.  Other diseases and syndromes also overlap w/what we have going on too.  It's just not textbook no matter how you shake it up.

Please stick around, we're here for you, and I know you are here for us.

I know I kid around, but seriously wish that you were not upset.  It's not a good feeling at all.  I've taken breaks before because I didn't even "want" to relate.  My mood was that far in the gutter.  I suspect yours might be too.

Talk to us girl, and please come back if you've already gotten your 2 feet out the door.  If you are only part-way out, hope you feel us dragging you back in by your keister (very carefully though).

Love,
SL
Helpful - 0
393986 tn?1303825975
Hey Sweetie, there have been many times I have felt like you do and I am sorry I haven't been here more for you.  I don't want you to go anywhere, remember most of us have started the road of limbo alone and along the course we have met some pretty wonderful friends here.  We all know how hard that road is, it is better to have friends to encourage us along the way, or cry to when our Dr's don't know what to say.  I do understand how you feel.

Please Sweetie, don't go anywhere.  We are like a family here and we care about you.  I am begging you to stay, Chris.

Love Ya,

Ada
Helpful - 0
428506 tn?1296557399
Hi, I'm another un-dx person.  I can relate to how you feel.  The strength of this forum is how close knit the community is.  At the same time, that can almost intimidate a newbie!  I guess I am the online equivalent of a loudmouth, and having the chance to let my feelings, questions and concerns out allowed me overcome any hesitancy!  For me personally I know the combination of reading about others and being allowed to share my own experiences has been invaluable.  

I'm close to you in age and joined around the same time as you.  That along with dealing with the stress of symptoms, fear, and no dx means we have a LOT in common!  When I'm scared at work, or up in the middle of the night with weird symptoms (like now, 3 AM on the East coast...)  I can come here instead of turning all of this in on myself.  If you need a break to re-group and look other places for help or advice, then please do that.  But  don't feel that you need to take all of this on alone, and know you can jump in on the forum whenever you please.  If you really need help and responses, just keep bumpin' up your post!  You will get caring, sincere responses.  Even if you just need someone to say "I can't help, but I understand how you are feeling."  We're here.

Take care!
~W
Helpful - 0
147426 tn?1317265632
I'm so sorry you feel this way.  It is true I haven't had a lot to offer you, but I should have offered more support.  I don't know much about the rib pain and know little about the meds used in nerve pain and how they should be used.  But, you have been such an important part of our forum for such a long time.  I feel bad that we haven't been able to help you feel that we understood your pain.  I wish you would stay and still be a part of us.  

I'm at a loss for something to say that would make you want to stay.  Stay and play.  Keep the friends you've made.  Maybe we don't know what is happening with you, but we are still your friends.  You've been so kind and caring with others, I think we need you.  But, if being here makes you more upset, then I don't want to be causing you pain either.  We will keep your place warm and I personally, totally hope you remain with us.

Quix
Helpful - 0
429949 tn?1224691579
Hi, I am sorry I didn't see your last post, but I just went back and read it. I can't help much on the medication advise part because I have yet to receive any medication in two years for even the severe pain in my eyes that I have had. So not being knowledgable in this category I don't know what to advise for you to do!

I just wanted you to know that you have always been very kind to me and I consider you one of my dearest friends here on the forum! And also I wanted you to know that you have been of some help to me with sharing your husbands story of his illness with ADEM. When I first came on the forum a lot of the members were not familar with ADEM, but sharing your husbands story gave me a lot of peace of mind that ADEM can be survived and maybe there is hope for some sort of normal life after it!

I have felt just the way that you feel right now many times in my life, and even here on the forum too! I don't have a dx of MS and I am still in limbo right beside of you!  I don't have a lot of friends outside of the forum, because I have found in my experience that a lot of people say they are your friend but are nowhere to be found when trouble strikes! I saw this in full view when I got sick and my vision was so affected that I can't drive. Not one of my old friends have came by to ask if I need to go anywhere in two years!

I decided to only let people in my life that have shown that they really care for me. This leaves me with not a lot of companionship as far as friends go, but the few I have are true! I actually have more friends here on this forum than I do in my own personal life! You are one of those friends!

I don't want you to go and I am sure that my life is not the only one you have touched here! You are a kind and caring person and it shows in the words that you write to others here! We all have something different to add here and your part is as important as any others!

If you ever just want to talk you can private message me if you want to, and I would love to talk to you any time. I hope you reconsider and don't leave us, because you have been an important support for a lot of us!

Your friend
~Santana~
Helpful - 0
222135 tn?1236488221
I'm sorry you feel people here don't understand what you are going through. We haven't really "talked" much so I looked at your posts and it seemed to me form the responses you got that people DID understand. I seems that you are getting somewhere, albeit slowly. I don;t know how long you've been looking for answers, but I do know it takes a LONG time and that everyone's symptom are a little different from everyone else's. That makes diagnosis even harder.

I wish you would stay with us a while longer, or at least pop in periodically to let us know how you are doing. We all feel like we can't go on from time to time. That's when you really need the forum to give you that lift you need to go on - with me its usually a kick in the pants that I need, lol! Think about it...we'll be here

Penn
Helpful - 0
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