frustration/depression

[IUMOM2]

I suppose this is more directed towards those of us in limbo (or those who experienced limbo). Although, I know those who are diagnosed can relate too.

Tomorrow, I'm going back to my former PCP. I should have never left her care to begin with, but a PT convinced me to see her doctor. Anyway, that's another story. I'm hoping we can reconnect and build upon our previous doctor-patient relationship.

I'm bringing this up because I think that this does have something to do with how I'm feeling. It's another time consuming doctor visit. I'll have to bring her up-to-date on happenings over the past few years since I left her care. I'm putting myself out there again. Will she dismiss me now? I doubt it. But I do have to wonder, and I suppose that's fueling my feelings of frustration.

At the end of the month I will go back to see my MS specialist. I really don't have any hopes for a diagnosis anymore. I really just want to be treated for my symptoms and to be believed (which I think, at this point, I am).

I've been at this limbo thing for four years now. My oldest daughter was a freshman in HS when this all began. She just graduated last week. Our son just finished his Freshman year in college, and our youngest DD finished her freshman year in HS. They are growing up before my eyes, and will soon be living on their own. I can't help but wonder if things would have been different if I hadn't been sick. They are great kids, so we haven't done too bad I guess....

Oh well, there I go rambling again. I guess I'm just a middle aged hormonal woman with empty nest syndrome (I'm surprised I haven't been dx'd with that. LOL!)

Can anyone relate to any of this?

Thanks for listening.

[Heather3418]

One of the hardest things for me as a patient that DOES have a diagnosis of MS; is to hear about those that have literally been in limbo for YEARS and have not received an answer.  This breaks my heart.

I do understand that there are alot of disorders that mimic MS and I understand the Neurologists for being cautious about jumping to any quick conclusions.  BUT...I still think that if it walks like a duck, swims like a duck and acts like a duck...it IS a duck.

Nobody wants a diagnosis of something when that diagnosis is incorrect.  I feel that alot of this "limbo-land," is caused by doctor's sending their patients from one specialist to another, without thinking of the patients suffering.  Allowing people to suffer in pain and not treating the pain, because the doctor does not know what is causing it.  I am one person that feels the person's physical suffering should be relieved, then pulling out ALL the stops to find out what is wrong.  Not making the patient wait months and months with no help, while their personal lives go to he l l in a hand basket.  

The patient's go through their own denial when they do not get a diagnosis.  They doubt whether their symptoms are being taken seriously by the doctor's.  They are dismissed time and time again, because the "puzzle pieces do not quite fit."  Well dern it, if the puzzle pieces don't fit, find the patient a doctor with a little more knowledge than they have, and be man/woman enough to admit they cannot answer the questions.  These doctor's ought to work harder to find someone that can help these patients in limbo.  This suffering HAS to STOP.  

I have always said, that if these doctors had their own family member sitting in front of them, they would do everything under the sun and medically possible to FIND out what is wrong with their loved one.  Maybe even swallowing their pride and saying, "You know, I may not be savvy enough about what you are going through to give you a diagnosis, but I know a colleague that may be able to help you."  And get them that help.  As quickly as possible.  

Stop making patients wait weeks or as I've heard in some cases, months, for test results.  Doctor's these poor patients are literally waiting by their phones, day in and out, waiting for your phone call, to tell them the results of their tests.  To make them wait like this is paramount to human torture.

I wish with all my heart, that I had the answers to the land of limbo.  I wish I knew how to get you help faster.  Continually I hear the stories of your pain and suffering, then hear that you are not being treated because "we don't have a clear diagnosis."  Dern it, this is the United States of America..  (not forgetting those in other countries) Where is the compassion you took an oath to provide?

God Bless all of you for what you endure.  You are all in my thoughts and prayers.  That is spoken from the heart...I assure you.

Big Hugs to All,
Heather

[IUMOM2]

Thanks for your support guys. SL,  I know those with a dx have these feelings too. I hope I didn't sound to insensitive. Thanks for the offer of help. I had a list made out, but left it at home. I did seem to cover most of it though.

Merleyne, Welcome to our forum. Everyone is so wonderful and caring. I'm like you though, I check in, but don't always respond as much as I'd like. It's so hard to know when to put the search on hold when trying to get a dx. I think so much of it depends on how much we are affected by our illness.

I do feel better since I saw my PCP. She was willing to give me some meds for the severe breakthrough pain I get every so often. She knows I don't like to take meds and even commented that I shouldn't be afraid to take it if I need it.

Thanks again for your help.

[challengecase]

I can relate to your comment, "I really don't have any hopes for a diagnosis anymore."  In my case, I have decided to stop the search for a doctor who gives a d**n!!  

There is nothing else I can do except find some peace with what is happening to me and take life one day at a time.  What will be will be.  I'm not trying to discourage anyone from stopping the search for your own answers....it's just what I need to do for myself.  

I am going to try and post in my profile my entire story soon.  This forum is a blessing to me because I can read posts and know I am not alone.  I'm not good at responding very often, but I am around daily!!!

Merleyne

[sllowe]

Hi there,

I can relate even w/a dx.  I feel as if I have to rehash everything w/the doc.  Dread going to the MD.  Seems she doesn't remember a thing, and doesn't care to review past visits.  Feel the same way w/my neuro.  It's stressful to say the least.  Although you understand they see so many patients, why can't they just have a baseline of some sorts to remember ...."a little" it would save us so much anxt.

I'm with you on this one - you think about it, try to come up w/a streamline approach to re-visit the issues,and when you walk out of there, you feel like - what the f' I still don't have any solutions.

You go today? What time? Anything I can do to help you streamline?  let me know, and if I can, I will do my best....

frustrated too -
-SL