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Recent diagnosis of ms and in huge denial

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    Recent diagnosis of ms and in huge denial

    Hi, I was recently diagnosed with ms almost as accident. I have numerous back problems and back in May started having shocking feelings in my lower back whenever I would put my head down (le'hermittes is what the dr's told me this is called). I casually mentioned this to my back surgeon and she ordered my first mri on my neck where a lesion was found. I then went and had an mri of my brain where 7 more lesions were discovered. I then was sent to a neurologist and after many nerve and other tests along with blood work he told me I have ms.

    I have many other symptoms that do make sense but I find myself searching almost every day for something else. I am now in a struggle with myself and being able to accept this. I started avonex in June and wonder every week why I am allowing my husbands insurance to pay $1250.00 per week for me to take meds when I am not in belief of my diagnosis most of the time.

    Is anybody ever played mind game with themselves over this or any diagnosis? If so does anybody have any advice for me?
    Thank you

    You just got diagnosed so it's pretty normal for you to be in shock and grief about it. Grief counselors say that denial can be a big part of grief and having to suddenly make adjustments you weren't expecting and certainly don't want.

    it's going to take time to go through the stages of grief and loss so try not to beat yourself up about having to go through it all. Not going through it wouldn't be healthy.

    Plus it's so early in your diagnosis that you haven't had time to start to learn all of the medical stuff that goes along with MS. That's going to have you feeling pretty lost too and it's pretty common for lost people to start looking for ways to not be lost. Denial can play a part in that too.

    Seriously, I think you should give yourself a year to gt used to your diagnosis and the changes it will bring. But if you are still struggling with acceptance in about 3 more months - which will put you about 6 months in - it might not be a bad idea to start seeing a mental health professional to help you get through the change.

    As much as we want to rely on our family and friends for help, they aren't professionally qualified to give the kind of help that kind of struggling needs. And they'll all be having their own issues to deal with. So a professional therapist can be a huge help. It doesn't have to be a long term thing - just enough to get you over the hump with the grief and struggling. Your family members might benefit from a few sessions of therapy too.

    You've already taken a positive step in starting on Avonex. The rest will just take time and maybe getting some extra help with the hard parts of the grief and denial.


      I want to tell you thank you from the bottom of my heart. I am laying here in tears and right now tears of relief and encouragement from a complete stranger. I don't know you but you have truly touched me and I know now I am not alone or crazy for my thoughts that I have kept such a secret. Again, thank you so so so much for your advice, support and encouraging words.
      God bless you and your journey through this life.


        Denial is normal. I used to assure myself that 'if only' I hadn't gone to the doctor in the first place, then I wouldn't have MS.
        Denial, bargaining, grief, then eventually acceptance. And usually with this will happen all over again, with every new relapse.

        Acceptance doesn't mean you have to like having MS. It just means knowing, at some level, that you've got it, and it's never going away.
        That doesn't mean giving up.


          Originally posted by from2344 View Post
          I know now I am not alone or crazy for my thoughts that I have kept such a secret.
          You're definitely not alone or crazy! It's going to take time to accept your dx. You never had time to even suspect you had MS, so your dx really was a shock. I never expected to find out I had MS, either, when I was having back problems.

          I've been officially dx'd for 12 years now. There is no doubt about my dx. Yet, there's been a few times when I've been surprised to still find my thoughts "wishfully" wandering into the "maybe the dx is wrong" zone.

          Share here, anytime, OK? You'll find fellow MSer's can relate, unlike anyone else, to what you're going through.

          Wishing you the best,

          “When you change the way you look at things, the things you look at change.” ― Max Planck


            awesome thread

            wow, that's me too. I just went to the neuro on Thursday, said I have progressed some but not to bad.

            So I have my med records came home and searched and searched. I wonder if he is sure. I also have these thoughts. I wonder am I just imagining this? No one in the family has this. Why would I? But I do!!!!!

            I was sick and weak and gaining weight, oh you're just lazy get up and excercise found out I have hypothyroidism. I had bad stomach ache and said it's just heartburn. My husband at the time said just take tums or something until I was rushed to the hospital in extreme pain and had my gall bladder remove. My shoulder was hurting, maybe I slept on it wrong for a year. Completely torn rotator cuff.

            I think we know our bodies and know that something is wrong it's accepting that it is so bad that's the hard part.

            It's MS it doesn't go away and usually gets worse.
            It sucks and I haven't accepted it yet, I see a therapist now to try to adjust and I was officially dx 2 years ago.

            Good Luck to you!!!!!!
            REBIF 1 YEAR


     are in some great company. It took many and I mean many hours on a couch in a psychiatrists office to convince me I had MS. My first major flare that ended my ability to run ended the denial really quick and then I went into major depression. It was a big BOOM for me. I had spent many years diagnosed with MS, but lived completely normal as nothing was wrong.

              Whenever I have a big flare, I seem to start over. I was just telling my Mom last week that when I was growing up I never thought I would have been diagnosed with something like MS. And I was diagnosed relatively young.

              It's really a hard pill to swallow...all this MS stuff. I am 50 now, and I don't deny my MS anymore. I do have MS and it has me for sure...but I try to adjust my life around it. And I think the biggest thing I am going through right now is learning to accept help from others, learning to say "no" to some (to include kids who are now raised), and to come up with inventive ways to make my life easier.

              It does get better with really does. We all have our "pity party" days here and there, but you learn how to play the hand you were dealt. What you are experiencing right now is very normal.
              "Yep, I have MS, and it does have Me!"
              "My MS is a Journey for One."
              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri


                It has been over 8 years but I can still remember my horror at getting a MS diagnosis. No words of wisdom but we do understand.
                He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.


                  I'm sorry for your diagnosis. We have all been there.

                  I've had symptoms for the last 4-6 years, official diagnosis in December 2012 and still working on acceptance which is a long process. Because I was misdiagnosed, I beat myself up over the fact that I wasn't getting stronger/better. Felt like a total failure. And in the back of my mind, over the past few years, I had a nagging feeling it was MS and not ADEM, but I could "get better" with ADEM... so I accepted that.

                  Anyway, when you have had time to breathe, definitely contact the local MS Society to see what events and support groups they have. Talking to others face-to-face will help.



                    I think I've gone through a similar thing and in fact my daughter accused me years ago of being in denial and then said, "what part of O-bands, multiple brain lesions, postive Evoked Potentials don't you get". HA...brat.

                    Like you it was a fluke that I was diagnosed. Was sent to the occupational health doctor on the military base I worked at the time due to some writst problem. After deciding it was just arthritis we discussed some other issues I was having (and had for a long time) of tinling and numbness in various body parts. He then told me I needed to see a neurologist, which I did, and the rest is history.

                    Because my symptoms are so mild most of the time I so often "forget" I have MS...except for having to inject myself, first 2005 -2013 with Rebif and then because there is progession ...additional cervial and T-spine lesions, and now Copaxone it's kinda hard to forget really. I just try not to let MS define me. I do what I can to follow my doctors recommendations...then just live life and try to keep a positive outlook.

                    I have a cousin who died in her mid thirties (in th early 1980's) from several complications of MS. There wasn't a whole lot available to the patients in times past. I figure, though I hate injection, it is something I CAN do to help myself and hopefully slow down or stop progression.

                    Wishing you health as you travel on this MS journey.

                    Eph 3:20-21


                      Everyone has given you wonderful advice. I would only add that knowledge will ease your pain somewhat. The more you understand the disease and your own body the more you will be able to live "normally."

                      Knowledge, and the positive things you do to battle your ms like your dmd, diet, supplements will help you regain control.

                      God Bless you.
                      Diagnosed with MS spring 2010; Still loving life


                        from2344, you are definitely not alone!

                        I spent several years convincing myself that I just had migraine headaches, not MS.

                        Coincidentally, I was seeing a therapist for other problems at the time I was diagnosed. Even with professional help it was difficult to face MS.

                        There's good advice here, and this is a very supportive community. You will get through it emotionally, a step at a time. Meanwhile, your rational self is taking charge, kind of on autopilot, and getting treatment with Avonex.

                        Hang in there.


                          I was diagnosed this past spring and I have been having trouble accepting my diagnosis as well. I used to be so energetic and would go hiking all the time. Then it slowly turned into just weekends, then not at all. I just felt so worn out all the time. Finally I woke up with no feeling in my right leg and trouble with my vision and want to the hospital. The doctor told me I probably pinched a nerve! When it didn't go away after a week I went back and they ran tests and scans and I got my diagnosis. On one hand it makes sense with a lot of things. On the other hand I don't see myself this way. I'm still the skinny tomboy who goes hiking and runs marathons. It's like I can't make the connection that I have this diagnosis now. I think joining a community like this is my way of trying to accept it. But I'm still going to do my best to keep trying to be the person I feel I am. I wish you the best of luck. But I know just what you mean.


                            Originally posted by from2344 View Post
                            Is anybody ever played mind game with themselves over this or any diagnosis? If so does anybody have any advice for me?
                            Denial is your friend! It lets you keep dipping your toe in for a taste of the new reality while keeping the full force of it from hitting you all at once.

                            My dx took over a year, but along the way two docs cited my prior cancer/chemo/radiation as possible causes/triggers for my nerve damage. I still use that sometimes to tell myself it's not really MS, but less and less all the time...
                            1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
                            NOT ALL SX ARE MS!


                              You've been given very good advice here. The only thing I can add is to take your time and allow yourself to grieve. Then (and I know this may sound harsh) but you will need to keep moving. Exersize as much as you can for as long as you can. Get a physical therepist and an occuptional therepist and follow their advice. And don't give up on yourself.

                              But most importantly, always know that we are here for you. This journey will definately have it's ups and downs. And never a dull moment.

                              I wish you well.
                              Be Well,

                              Dx 1995 as RRMS, 2003 SPMS Rx: Gabapentin, Baclofen, Wellbutrin, Clonazepam