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Calling all limbo-landers! Limbo check in for 6/12/2012

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    #16
    RIGHT. It's not wanting to have MS or any other disorder. It's wanting to know what's going on, because the limbo feels so much worse than just *knowing*.

    I also admit to being possibly unrealistically optimistic. I dealt with mental health issues for years, and didn't seem to be making progress in getting better. After 13 years of therapy, I finally got the right diagnosis. A little more than 3 years after that, I was feeling so much better that the difference was nearly unimaginable.

    I want *THAT* with my physical health. I want to feel so much better that I can barely remember what it was like to feel this physically bad. I want to have a diagnosis so that I can hopefully find the specific approaches that will help treatments to be effective.

    Realistically, it looks like we've ruled out anything that will respond to treatment so that I will get as much improvement with physical health as I have with mental health. But at the same time, something that is even a little effective has got to be better than treating symptoms without understanding what's causing them.
    Accepting reality is not the same as wanting to have a problem. It means accepting something that will be happening whether I want it or not.

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      #17
      I get it

      I'm so sorry JayEm - I totally understand your situtation being like this for 12 years. I'm so afraid they are going to tell me again on 6/28 that it's 'nothing' - and I'm back to being crazy

      So happy to have found some friends
      Peace, Love, Laughter
      michele - dx 2012, 1st sx 2000 - starting Copaxone 7/2012

      Comment


        #18
        Yes, Jay Em...there is a lot to be said for knowing what you are fighting. 'Limbo' is not a good state of mind for me and never has been. The lack of focus kills me. FWIW, I like rants, so rant away. I like enjoying them vicariously. I think many of us know exactly what you are feeling. One other thing...I'm a visual person, and I'm the kind of person who needs to see things and understand them to come to terms with them, so I completely understand your need to see your MRI and have them explained.

        Wild Rose, I'm so sorry about your decline. I can only imagine how scary it must be to have that level of decline and not know what it is. My symptoms have only become 'un-ignorable' in the past year. My heart goes out to all of you who have been at this for so long.

        Now that I have had sufficient time to calm down and go back and re-read the other posts...

        Stalo... I think the very worst part of not having a diagnosis, especially for an 'invisible illness' is not having validation for something you KNOW is wrong with you. That's sort of 'crazy-making', and compounds everything else you are dealing with.

        TamBrown...my Neuro told me that when insecure Doctors don't have an answer, they turn it back on the patient. (Gosh I wanted to hug him for that!). If my doctor told me my symptoms were stress, I'd be out that door so fast! I'm a tough old bird, and Lord knows I've had stress in past and it didn't take away my ability to walk. No Pina Coladas for me. I'm having Magnesium Citrate and big bowl of Vitamin D3...I would be happy to share.

        LuciousLeaves, there is a lot to be said for the accomplishment of getting something done. I'm impressed. Want to do my house next? I have set a bar for myself of things that I will force myself to do each day if it kills me, just so I can feel like a human being who is worthy of being on this earth. They might be small, but the feeling of contribution is what keeps me going.

        Thanks for letting me on your thread, MiniVanMama.
        "Man's importunity is God's opportunity. He uses our problems as building material for his miracles." ~Corrie Ten Boom

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          #19
          Wild Rose, what do you mean 'the new blood test for MS'?

          I've never heard of that.
          "Man's importunity is God's opportunity. He uses our problems as building material for his miracles." ~Corrie Ten Boom

          Comment


            #20
            mandapanda2888 - Waiting is so hard to do. I hate waiting. I pray that you will get some answers.

            I hope your back is better. Enjoy your trip out of town. I hope it is for fun.

            Lots of (((hugs)))

            lusciousleaves - Good to see you. What a grat accomplishment. Way to go. Now rest and don't work to hard.

            I hope you can get in the garden soon. The weather sounds grate.

            Lots of (((hugs)))

            Tambrown - Good to see you. I can so relate to your neuro visit. I was told by the first neuro i saw that my sx were due to me being the mom of 3. I hate when doctors blame it all on stress.

            I am 37 and have been useing a cane for 4 years now. It was so hard to use it at first.

            It is hard when you can't do the things that you want to do. Just know that you are not alone and we all understand how you feel. We are here anytime you need us.

            Lots of (((hugs)))

            Poohb3ar - (((hugs))) to you. I hope you are feeling ok and doing ok.

            Jayem - Good to see you. I hope your EMG will give you some answers. Always remember that you can come and vent anytime here. That is what the island is for. We can all understand how you feel.

            I hate when doctors blame it all on stress. That relly gets to me when doctors do that.

            I am glad to see that you have a pretty cane. I have one too and I love it.

            I think you should bring the prominet brainstem up to your doctors. That was a good find. I also love looking at my MRI'S. I think they are cool to look at. My DH thinks that i could go into radiology so i can look at them all the time.

            Lots of (((hugs)))

            Chicken mama - Welcome. I am glad that you found us and are posting what is going on. You can vent anytime that is what the island is for. Being in limbo is hard and it is comforting to know you are not alone. I know for me it is and i was so glad to have found the limbo thead years ago.

            I am sorry that you are looking for answers. Just know what you are feeling is normal. At first it is all that you are thinking about and it is always in your face. It is not wrong to want answers and get a dx.

            Just keep on posting and I hope you will get answrs soon. Lots of (((hugs)))

            Stalo - (((hugs))) and i hope you are doing ok.

            thewildrose - Welcome and i am so glad that you found us. I am sorry that you are looking for answers for 12 years. Bless your heart. I have been looking for answrs for 5 almost 6 years now.

            I am praying that you will get some answrs at your next visit. I know the feeling of worry that you have with your upcomeing apt.

            Just know that you are not crazy. Keep on posting and vent anytime that is what the island is for.

            Lots of (((hugs)))


            It has been a long and emotional week for many. I am glad that you came here to share what you are feeling. We all feel that way. It is so hard to feel so bad and have doctors blame it on stress or kids.

            Don't ever feel bad for comeing to the island to vent. That is what the island is here for and others are here that understand what you are going through. We are here for each other good times and bad.

            I find it comforting to know that i can come here when things are good and bad. I always know y'all are here and give me encouragment when i need it to help with the storms that limbo can throw at me. I alway know y'all are here when things are good and root me on when times are good.

            Lots of (((hugs))) everyone. I will be back later to let everyone know how my trip was and how i am doing. The kidos are in the living room and i think they are hungry.

            Comment


              #21
              ChickenMama you are so dead on!

              I do not know the first thing about forums. I do not know the first thing about MS. All I know is that I have developed optic neuritis from out of NO where, my body AND mind seem to be plotting against me at every angle, and I am scared ******** that I may have multiple sclerosis. I don't know what's going on... and I DON'T LIKE THAT. ChickenMama: your thoughts/post are the most "normal" thing I've read about this dreaded disease in the past two weeks (the time I've been practically blind and been "directed to see a neurologist due to the lesions found on my brain after MRI")..... H*E*L*P ! Where do I go next? Who the **** do I talk to about this? What do I tell my children & husband is wrong with me? I DON'T KNOW WHAT TO DO OR WHERE TO GET ANSWERS!! I just want it all to go away......

              Comment


                #22
                Help help help - I don't know what to do about work

                My dr has had me on FMLA since end of April - it's almost out. Dr told me last week that she does not want me going back yet. Neuro says we'll discuss on 6/28 - too late!

                This morning, I get an email from the FMLA place that I have to confirm I'm going back to my job on 7/1, or resign my position - NOW. I called my dr, waiting for call back.

                The only option from my work is to apply for short term disability - or go back and risk being fired for my mistakes

                Am I a baby? Should I just try to go back? I can't do much of anything for more than an hour or two - then SLAM I HAVE to lie down. If I don't, I can't talk right, remember anything, walk, etc. I can deal with the pain - but I work in information security in a hospital - one wrong click and I can do some serious damage - like opening your medical record to the wrong people - this SCARES me to death.

                I don't have a cane - walk the walls when I get tired. No meds yet cause insurance won't pay without dx. No treatment of any kind. It's the little things, you know - like the bathroom is a mile away, I have trouble walking, and sometimes don't know I hafta til it's almost too late.

                And 8-12 hours a day looking at the computer, along with the stress - I don't know how long I'm going to be able to do this

                I can't apply for disability with no dx ??? I have to resign my position and lose my health insurance to do this also. Why does it take them two and a half months to do four tests?

                I just don't know what to do
                Peace, Love, Laughter
                michele - dx 2012, 1st sx 2000 - starting Copaxone 7/2012

                Comment


                  #23
                  Blood test for MS

                  Originally posted by Chicken Mama View Post
                  Wild Rose, what do you mean 'the new blood test for MS'?

                  I've never heard of that.
                  I never heard of it either - my neuro said it was just approved by the FDA and I can't remember what University in CA is doing this - but they have a certain number of labs that they've approved to draw the test. Mine is today - the lady is coming from Baltimore and supposed to be here around 9:30 - if she can tell me any more, I'll let you know.
                  Peace, Love, Laughter
                  michele - dx 2012, 1st sx 2000 - starting Copaxone 7/2012

                  Comment


                    #24
                    I'm back

                    I left the forums after being in limbo and had decided to tell myself I've decided myself that I don't have MS.

                    Well, it's almost two years since waking with left eye closed and not working and from there started all the cat scans and MRIs, Spinal Tap, on and on and on. After passed around through three nueros with all suspecting MS - I just wanted to be left alone with what is now both eyes not working well at all.
                    Lost my job, but thankfully had short term disability which has since turned to long-term disability (and their trying to get me on SS). I had to go to their designated nuero for an independant exam and once he said he agreed with the possible MS dx, I am back here meandering around with you all.
                    Wild Rose - don't let the job issue make you too crazy - it is scary not having my insurance anymore since I can't afford to see the doctors if I wanted to, but, there's not much we can do . . . so try to not let the stress add to your health issues. We can only do what we can do.

                    I hate this like you all . . . really hate it! With in laws not once ask me how I'm doing, like I'm making it up or being a baby or what ever and just the daily struggles, it sucks.

                    I had no idea really what MS was all about and am surprised at all the variables. Thank goodness we have each other to complain to and give support to.
                    Not sure I'm glad that I'm back here or not, but, it is what it is.
                    I sure hope you all have a good day!

                    Comment


                      #25
                      Just talked to my dr

                      She told me she wants me to a) write my neuro and see what he thinks, but b) make sure to tell him she wants me to apply for short term disability.

                      I'm just freaking a little - it's so much to take in - I went from working 12 hr days nonstop - to the ER - to disability in the space of a few months. It makes me think, no way - this isn't getting better any time soon

                      I hope my neuro has some test results and will give me some news

                      Peace, all
                      Peace, Love, Laughter
                      michele - dx 2012, 1st sx 2000 - starting Copaxone 7/2012

                      Comment


                        #26
                        MS Blood Test

                        Originally posted by thewildrose View Post
                        I never heard of it either - my neuro said it was just approved by the FDA and I can't remember what University in CA is doing this - but they have a certain number of labs that they've approved to draw the test. Mine is today - the lady is coming from Baltimore and supposed to be here around 9:30 - if she can tell me any more, I'll let you know.
                        The lady that came to draw my blood for this test did not have much info - but did give me this addy: They are the only company doing this and your neuro has to special request them to have a lab come to your home to draw the blood - unless you live in the California/Oregon/Nevada area - there are approved labs there.

                        Peace


                        **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**
                        Peace, Love, Laughter
                        michele - dx 2012, 1st sx 2000 - starting Copaxone 7/2012

                        Comment


                          #27
                          Originally posted by thewildrose View Post
                          I can't apply for disability with no dx ??? I have to resign my position and lose my health insurance to do this also. Why does it take them two and a half months to do four tests?

                          I just don't know what to do
                          I applied for and received disability with no dx that should have gotten me through so easily. I had been unable to work even part time for more than two years by that point, so that might have helped my case. But I focused on being very descriptive in my application of the difference between what I had been able to do, and what I could do by that point (and again, when they re-evaluated me last fall).

                          Not saying it's the best option, but at least it's some help if you don't have other options.

                          And I would suggest using a cane if you even think you need one. They cost less than $20 at most drug stores, and here are some advantages:

                          1, they help with balance and somewhat with fatigue.

                          2, they remind me to go a little more slowly, which helps to conserve my energy.

                          3, they remind other people that I'm dealing with mobility issues, and make them more likely to give me accommodations.

                          Good luck with the whole job thing--it sounds overwhelming, to say the least.


                          lindajot: sorry you're back on the roller coaster, but glad you've got some support here.


                          Good thoughts to everyone. Not having a good brain or eye day today, so I'll leave it at that.
                          Accepting reality is not the same as wanting to have a problem. It means accepting something that will be happening whether I want it or not.

                          Comment


                            #28
                            Red Razz - Glad you found us. I am sorry that you are looking for answers. It is so scary when you are feeling so bad and don't know what is going on.

                            You have come to the right place to talk to others who are in the same boat you are in. I am married and have 3 kids and have been in limbo for 5 years.

                            Just tell your hubby what the doctor told you.It may be a good idea to have go to the neuro with you. That way he knows what they are doing and what is going on. I take my hubby with me to the neuro.

                            As for kids you can tell them your eyes are not working right and the doctors is trying to make it better. That is what i
                            told my kids when i had ON. If they are older you can tell them what it is like to see and what your eye feels like. You can also tell them that you are not feeling well and that you are going to the doctor so he can help you. This is what i have told my kids over the years.

                            Keep on posting and know that we are here for you as look for answers. I hope this helped. Lots of (((hugs))) and i pray you get to feeling better soon and find some answers.


                            thewildrose - Glad that your doctor called you back. I know this has all gone so fast. I hope you do get answers and that you can get back to work when you can.

                            Lots of (((hugs))) and i am praying for you to get some answrs and get to feeling better.


                            OK time to start the new thread. It is island time

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