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Lost, lonely, and not really definitively diagnosed

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    Lost, lonely, and not really definitively diagnosed

    Hello World,

    Hoping to connect with sufferers out there, because I feel like my doctors are trying to push me into some sort of hypochondriac corner. I've had health issues for 10 years (right hand nerve issues, incontinence, IBS), but the real change was about 4 months ago. I went from biking to work 3x a week, lifting weights and kickboxing 2-3x per week, and long distance running - to - nothing. To the point that I couldn't walk the length of my house without thinking I was going to pass out. I spent 5 days in the hospital and was discharged with a mention of chronic fatigue syndrome and "to get more exercise." Right. The exercise I'm supposed to get when I can't walk more than 20 feet? BTW, I can walk maybe 50 feet now....if I go any further, I have to sleep for 14 hours, deal with a whole lot of pain, and expect the entire next day to be horrible.

    Since then, I was negative for definitive MS, but positive in respect to the symptoms. I'm sort of diagnosed as having RMS. I don't care about a diagnosis - I want to feel better. I am miserable. I can't leave my house and run errands without ending up in tears in pain and fatigue - I still can't walk much more than 50 feet without losing my balance and trying to stay conscious. My vision blurs and I feel like I'm going to fall down, pass out, or both....and I just keep my feet moving, to my amazement, and I can make it to where I can lean on something or sit and recover. Now I am dealing with back pain that takes my full concentration and often full on tears to get through - WHILE trying to keep my job. I live in pain all day every day now. I can barely get around, let alone do the things my family needs me to do.

    Do I sound familiar at all? Have any of you been through this and found medicines that will help you? Please tell your stories, tell me what you know - I just want to stop the pain, the fatigue. I want to stop being a burden on my family and get back to being the hard worker and active athlete I'm used to being.

    Hi AbbyGA and welcome to MSWorld.

    I am sorry you are having such a difficult time, hopefully Drs. will be able to figure out what is going on.

    I was negative for definitive MS, but positive in respect to the symptoms. I'm sort of diagnosed as having RMS.
    There is a diagnostic criteria for MS and cannot be diagnosed based on symptoms alone. Many conditions, vitamin/mineral deficiencies, some medications and mental health issues cause symptoms similar to MS. All other possible causes for a person's symptoms must be ruled out and testing which indicates MS as a possibility.

    Did you have MRIs of both brain and spine?

    Information about diagnosing Multiple Sclerosis:

    Information on some of the other conditions that would need to be ruled out:
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic


      Hi AbbyGA

      I'm sorry to learn that you have been suffering from pain and fatigue, as well as other issues.

      If you don't mind my asking, what kind of tests have you had, to determine what could be the cause of your symptoms? Thanks.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~


        Originally posted by KoKo View Post
        Hi AbbyGA

        I'm sorry to learn that you have been suffering from pain and fatigue, as well as other issues.

        If you don't mind my asking, what kind of tests have you had, to determine what could be the cause of your symptoms? Thanks.

        Take Care
        I was thinking all of the above and hope you find some answers soon.
        There are so many differential diagnoses. I recently heard about someone diagnosed with myasthenia gravis after MS was ruled out.
        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.


          Hi AbbyGA,

          So sorry for the pain and other symptoms you are experiencing.

          Since they kept you 5 days in the hospital, did they diagnose anything other than potential CFS? It is rare that they keep people overnight anymore without some type of diagnosis. Insurance companies put pressure on to kick everyone out. Did they do testing in there? Did they discharge you with any follow-up instructions?
          DX 01/06, currently on Tysabri


            Abby, while we can’t diagnose specifically what is going on with you, we here all understand as we have struggled with many of the same symptoms you are describing. Unfortunately, diagnosis of MS and other conditions isn’t always simple or fast.

            What you are experiencing is definitely scary and my guess even terrifying at times. Whether you have MS or something else, please know you are welcome to hang out here as we have all lived with similar pains, fatigue and uncertainty in our past. I hope you find some resolution soon....and just please try to be good to yourself!! And do the hardest thing, at least it is for me: “Ask for Help!!”

            Sending Prayers and Hugs your way! MGM 🙏🏼💕


              Hi Abby,

              so so sorry to hear what you are going through. It must drive you crazy to have been so active, and now you can’t be, and people say oh just get some more exercise”. 😡😡😡 how frustrating!

              i really hope you have some luck finding the help and answers you deserve


                Hi Abby. You've received some good advice here.

                I wonder who your doctor is. Your primary care physician, or are you seeing a neurologist? A neurologist, or even an MS specialist, can help rule out other illnesses that look like MS and give you a more definite dx, whether it is MS or something else.

                I also wonder how long you've been experiencing this round of symptoms (mobility, balance, vision, pain, fatigue, etc). If it's not improving, perhaps you need a round of steroids to help you get past this exacerbation / flare?
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.


                  No use seeking an MS diagnosis. I understand the agony of being treated like a hypochondriac. The answer to that is when they give you ‘that look’ you look them in the eye with fierce determination. “I need a diagnosis! If this is not MS we need to find out what is happening. If we can’t find out what is happening I need help treating my symptoms. I have pain. I have pain.”



                    I want to provide a link for something to read, or listen to their podcasts.

                    Even though you do not have an autoimmune diagnosis it is good information.


                    You can search autoimmune wellness in your podcasts.

                    Many people go through what is called limbo land. Including one of the authors of autoimmune wellness.

                    My fatigue, pain, and mental capacity has improved following the autoimmune plan (AIP).
                    God Bless and have a good day, Mary


                      Hi Abby . I'm JerryD from Philadelphia. I have read your thread and I am sorry for your unexplained problems. I didn't read that you were given the entire battery of tests that are required to receive an MS diagnosis. I suggest that you find a neurologist that knows the correct DIAGNOSTIC CRITERIA and FOLLOWS THAT !
                      I understand that this is difficult. I spent 4 years or longer trying to find the right neurologist for my situation. Also, you should get a vitamin D blood test . If the level is below 25, you need to begin supplements.
                      I maintain my vitamin D level above 40.
                      I hope you get your health situation stabilized ! Don't stop trying ! Come back to the message boards soon . Good luck