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So tired of being 'possible'

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    So tired of being 'possible'

    It's been over ten years and still no dx for me. No group to say 'yes, I fit in here' because I have no dx. No forum that will really have me where I can talk about all this. It's so lonely being a 'possible'. No answers, no treatments... just tests and waiting for the bill to arrive after periods of silence.

    I'm tired. I'm usually upbeat and 'it doesn't matter, I just do what needs to be done'. Tonight- I'm tired. I'm lonely and scared. The pain is increasing again, my arms are folding like chicken wings, my facial ticks are getting worse, my legs are disappearing, my eyes keep going blurry and I'm so tired.

    I'm tired of doctors telling me that I can't have 'X' because it's rare. Tired of seeing my Husband struggle to know what to do next. Tired of my friends going out without me. Tired of getting ten calls a day about past due hospital bills. Tired of living on the third floor and being stuck in this house by myself all the time. Tired of not being inable to walk but not walk either. Tired of burning up on my spine but having numb feet. Tired of making odd faces in public and having people stare at me. Tired of being sore from all my muscles going haywire. Tired of rocking like a limp fish when I want to sit up and engage in life. Tired of not sleeping, tired of sleeping all the damn time.

    I know someone has it worse than me- and that makes me feel even worse. I don't even have the right to post in this forum, I guess. I'm just a 'possible', a non-entity, the freak in the corner again.

    Tomorrow, I'll feel better. Tomorrow might hold an answer or a path, I know. Just tonight- I'm tired.

    I get it, I really do. My first acknowledged symptoms started in 1998 and it took 10 years to get a definite diagnosis of MS. The chief value of the diagnosis is that I now have an answer when people ask what's wrong with me, and in addition a percentage of the cost of orthotics and meds can be covered by insurance (no small matter). But from several other important perspectives - particularly with regard to cure - diagnosis is almost a moot point.

    Neurological conditions from any cause whatever are nightmarish, for patients and loved ones alike. The hardest thing for me and my husband to get our minds around has been the fact that ten "experts" can have ten equally viable opinions. My blessings to you, and for whatever it's worth, your symptoms and your situation can have a hearing on this forum.
    MS with cervical and thoracic cord lesions


      Thank you, Bonnette. I know you are right and part of me just wants it done with. Then maybe people won't just see a 'lazy' person in a chair- but a fighter. Because, I swear, I am fighting with all I have.

      Another part of me wants to run (haha) screaming from the whole thing and just bury my head in the sand. I tried that for two years- didn't help much. *grimace*

      Now it's a matter of affording insurance premiums that cost 1/4 of our monthly income and the fear that something will be written down in a chart somewhere before we are able to get insurance- then I'll be denied for previous conditions. Oy.

      Thanks for letting me know it's ok to be here, even though I'm not officially anything yet. I really appreciate it tonight.


        Well, I have been a mystery for too long. I have a major dr phobia because of the bad treatment I have received in the past. I have gone with the burry the head in the sand technique for too long. I am finally going to see a dr tomorrow and start the dx roller coaster.

        I am really nervous. Actually totally freaking out would be more accurate!

        I hope that there will finally be some answers and I won't end up a continual mystery like I have been for the last 30 years...


          Oli, I hear you and relate completely to your phobia based on prior bad treatment. I hope that the diagnostic process will be easier than anticipated, and that results will not take long. At some point, not knowing what is wrong becomes more stressful than the possibility of receiving a dreaded label - it sounds like that's where you are now, and that's where I was when I finally decided to agree to the lumbar puncture and all the rest.

          Best wishes for as quick and smooth a process as possible - facilitated by good docs, nurses, techs and equipment - and a personalized followup/treatment plan when all has been accomplished.
          MS with cervical and thoracic cord lesions


            I went for about 6 years or so before I had a diagnosis...and the whole time I was told the same thing you cannot have that. Sometimes I was told it is all in my head...see a shrink...other times I was told I wanted to be like others in chairs so I am manifesting the symptoms. It was frustrating to watch me lose function all while being told it is in my head. There has to be a better answer to give a patient than that. It is more frustrating to hear that than to hear I do not know or even losing function.

            Hang in there...lots of people have been where you are now. Someday you will get the relief of diagnosis...and can tell all of those "experts" I told ya so.
            "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss


              I am getting really scared now that my appointment is tomorrow.

              I have a whole cluster of things that are happening all at the same time that I am not able to handle.

              My mom is arriving this afternoon and she knows nothing about me or what is going on with me. I have to keep everything from her for her own good (loooong story, long history). Hard to do when you are freaking over a Dr.'s appt. the next day. She is going to wonder why there is a wheelchair in my house....

              My husband has been completely unavailable. He has been out of town, then off playing golf with his brother and just not paying any attention to me or my torment of fear at all.

              I am SO scared about this appointment. I made the decision to go to a Dr. and then made an appointment before really thinking it out. Now I am so freaked out that it is happening so fast.

              Ug, sorry for whining. I know there is nothing anyone can do...


                Oli, I'd accompany you to your appointment if I could! I so relate to your panic and fear, now that the moment has come. But remember: no matter what the doctor recommends, you are under no pressure to do anything without taking the time to think it over and research the specifics. You're not under the gun or on a timetable, you've simply begun an investigative process. Take everything one step - or even half a step - at a time.

                I suggest that you write down your symptoms and questions in the order of their severity/importance and memorize the list (or at least read it over many times), so that you won't have to constantly refer to it in the doctor's office. Be prepared for questions about dates, duration, impact on organic systems and lifestyle, level of endurance and physical capacity.

                It's good to have someone else with you at doctor's appointments, because stress makes it difficult to assimilate and remember what's been said; but since you will probably not be accompanied, is there a way for you to record the conversation - a miniature tape recorder, or a phone with that function? When you play it back, you might be amazed at how much clearer things become days - and even weeks - later, and how many statements were made that you don't remember at all.

                This is not the best time for a visit from your mother, is it? But she's bound to find out sometime, and seeing your chair will certainly open a conversation. You can simply tell her that you've been having some difficulties and you need to be checked out so that you can feel better. I wish your husband were more supportive, but apparently for now that is not to be. You'll get through this. The forum is a good support in many ways, too.

                I suspect that you made the doctor appointment without "thinking it through" because it really didn't require much thought - 30 years without answers is long enough. I hope that you will go to the appointment, but not with the sense that it dooms you; rather, consider this a fact-finding mission. The appointment WILL give you things to think through, and you don't have to do everything at once. Second opinions are important, too.

                Best wishes, let us know how it goes!
                MS with cervical and thoracic cord lesions


                  Thank you. Great suggestions.

                  I will see if I can make a list of 'symptoms' and bring that. It is a little hard for me since I have no idea what 'normal' is, I have trouble identifying what it is that should be addressed.

                  For example, when I was about 29 I was at a concert with my hubby and we had to stand for a very long time. The pain for me was so unbearable I didn't even know what to do. I can't even explain the pain.

                  I looked over at my hubby and asked him if his back hurt and he said 'no'. I was in total shock. I had no idea that people could stand for any length of time without being in terrible pain. It just never occurred to me because I was always in pain and I thought everyone else was too. Duh...

                  I will see if I can try and write stuff down while I am there since I don't have anything to record...

                  Thanks so much.


                    Oli, also start thinking about your medical history and make notes about things that your doctor might find significant - especially your viral history and any peculiar symptoms or episodes that seemed to get better (or even go away), dating back to your childhood. If your symptoms are episodic, make a note of times and circumstances when you feel better and worse. Then the doctor can be like a detective, putting the clues together into a working theory or theories that can be tested. And it's onward from there. I salute you for initiating this process. As my neurologist would say when I showed up with a new symptom: "We need to know more"...and now you've taken an important step in that process.
                    MS with cervical and thoracic cord lesions


                      I second everything Bonnette said

                      Oli- I won't be there physically but we will be with you and rooting for you. I'll gladly be your cheerleader I wont torture you and cause permanent psych damage by dressing like one- but I'm cheering for you!

                      I got good news today. A friend is willing to come by twice a week and help me leave the house. I'm excited to not be stranded up here any more. Forgotten and alone- it's the ol' "Well, she'll be there when I get back/done/time". No longer forgotten- now I know I'm not alone. I was afraid to ask her, but she said yes and she wants to hang out more. I wouldn't have my chair set-up right without CC, so I wouldn't have been able to leave. I wouldn't have the idea without CC and I wouldn't feel like I have the right same as anyone else to get answers, care, knowledge and see what the outside feels like--no matter what my dx may or may not be.

                      My favorite doctor once told me something that stuck with me. I was hesitant to go to the hospital- what if it was nothing? I had been told I had 'nothing' for so long, and they were the experts- right? He told me, "It isn't about what will happen if you go, it's about what will happen if you don't".

                      Stuck with me ever since.


                        Oh, that is indeed wonderful news, BlueRing! I am so glad to learn that you are no longer stranded! And those words from your favorite doctor are truly full of wisdom.
                        MS with cervical and thoracic cord lesions


                          Wow, that is a good friend. I am still trying to acquire one of those...

                          Funny that you mention my history. I have no memory of my first 20 years of life. A couple here and there but most of it is a big old blank.

                          People had been pestering me to ask my mother and I didn't want to upset her but I finally asked her for a family history and she said no. She doesnt want to talk about it.

                          So I have no history before 20.

                          This is starting to be more of a problem than I thought.

                          Well I will just try and keep in mind everything I can remember and see what happens.... I am getting more and more nervous especially with what happened with my mother last night. I can't wait for all this to end!


                            That is an unusual response to your request for family medical history, Oli! Well, all you can do is the best you can, so if you have no memory of your life before age 20 and your mother won't divulge the family history, then that is what the doctor needs to know. Try to remain on an even keel, not looking beyond the events of the day (or even the hour, if need be) - that's a tall order, I realize, but I believe it will serve you well.
                            MS with cervical and thoracic cord lesions


                              Well I went and it was not so good. The dr didn't really 'get' what I was saying and suggested exercises. Exercises? Exercises? Give me a break. I used to work out with mr America back in the day. I have trained show horses for 30 years. I have worked very hard physical labor most of my life. I have done ALL kinds of physical therapy... Exercises ain't gonna do it. I have been in serious pain for my entire life during all kinds of exercise. Doesn't matter what I do. I want to know WHY I am in pain.

                              The good news is that even though I have avoided it for 10 years and was terrified, I got a blood test. My Service Dog laid on my chest and smooshed his face on my face and distracted me so I didn't pass out.

                              So maybe I will at least learn something from the blood test and be a 'possible something'...

                              I kept on my mom about my history and she isn't talking much. I know there is a reason why I am missing 20 years and it is basically because of her. I understand why she doesn't want to bring it up.

                              Thanks for supporting me today. I really appreciate it. I had to make some phone calls in my stressed out state to people who could calm me and talk some sense into my fear. It worked.