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  • egibbs6


    My goal is to get some insight on how others who struggled to find a diagnoses finally did. I'm miserable with all MS symptoms and have a clean MRI's of brain and spine (with a few dots in the frontal lobe, which they aren't worried about), so neurologists don't have answers. I have bad episodes that come and go throughout the day so when I've had a neuro exam (which is just a quick moment in time) I can pass it. My fear is it won't show up and I won't ever be properly diagnosed as mine could be not inflammatory in nature and more dengenrative over time which may suggests PPMS, hence no or disappearing lesions at the time of MRI. 

    My story: I have been having weird neurological symptoms for 9 years - come and go, worse at certain times but always around and have been manageable for the most part until recently. So the past 5 months I have started to get worse and worse. It all started with dizziness, tingling and leg weakness 9 years ago. Now it has grown to arm weakness, random tingling throughout my body, muscle twitches everywhere, horrible episodes of brain fog, speech issues, nerve pain, etc., etc. What's worse is my family thinks it's CFS and anxiety. I have been tested for every disease that mimics MS, all negative. I feel so isolated with these symptoms, I KNOW something is very wrong. 

    If anyone else out there could offer insight on how I can advocate and help doctors lead me to a diagnoses that would be helpful! I want to make sure more time doesn't pass before I can get on the proper drug.  Thank you!

  • dkw
    Sorry for your struggles. I believe there is still So much to learn of this disease. I am hopeful that funding and research will become available and make it possible to better provide answers. If you read my story you will see I have dealt with some of the same issues as yourself. And, my mother before me. And her family and mother before her. I believe there is a form of this disease that doesnt show itself as readily using the basics; MRI and spinal tap, specifically. As the community has been trained, I believe at this point, to Only rely on these findings, we find ourselves not Even fitting in with the So already misunderstood MS community. I believe there is a Very defined form of this that may possibly pass genetically and carries a very similar fingerprint. Vision issues, swallowing issues, weakness in the legs, fatigue, temperature intolerance. I am (5) years in and believe what we have will rapidly progress no matter what we do, thats currently available. I am persuing a diagnosis mostly in case my children need the name some day. I am hoping not. Best to you on your journey. Stay strong, dont let ‘em get ‘cha down:) 
  • Ahmad_EL
    1) Have you seen an MS specialist?
    2) Do you experience tingling when you flex your neck?
    I experienced weird symptoms over a year before they diagnosed me with MS. Last visit with my neurologist that I visited when I started having MS symptoms, she said,''I don't know what is causing your symptoms.'' 
  • egibbs6
    Thanks for your reply! Yes, I'm currently seeing a specialist who doesn't think I have MS due to MRI's and clean neuro exam when I was in the office. I expierinece tingling all over, but yes in the neck as well. How did you get diagnosed? 
  • maria1
    egi, lifestyle changes are important in living ith ms. Being in a place of peace no matter what will afford us the best life. How we handle our lives is relevant. I went more than twenty five years without a diagnosis, but then there were no disease modifying drugs. In that time, I paid attention to my body and what it was saying, and i did my best to avoid people who generated negative energy.

    Things we do not handle well will bring on more disease activity no matter what type of ms we have, time moves in one direction for all of us, worse, and how we avoid the progression or excuse me, the rapid progression is up to us, no matter what drug we are on. Financial stress is  as bad as not having the drug. Drugs that cost more than seventy thousand dollars a year, even with insurance is a major stress. I am now at spms and do not feel half as badly as when I was at rrms. Yes, I function less do less and feel a relief too. Not going to the doctor is a pleasure, not having insurance worries or tests at hospitals or other facilities is a relief.

    Having other people know there was something wrong was a mixed blessing, those who could not handle it were still in denial and still made my life miserable, oh, you're not so bad, so and so's son is in a wheel chair and can not walk, etc, so I did not kiss them good by, I just walked away, actually drove a couplathousand miles, really, it was because I could not afford to live in their neighborhood. Adapting is key, and difficult, learning to adapt to situations we can not change, not just adapting our circumstances but adapting our lifestyle how we smoothly transition to the things we hate and dont want because that is all there is.

    Learning to keep the scales balanced, the ugly with the pretty, the happy with the sad, the empty with the full, how to recognize that when we are feeling the worst there is still cause to smile with satisfaction. yeah the house is filthy but we got heat, we got food, we got electricity, we got clothes. Things we always took for granted no become blessings that we have, and we are good to remember not to take them for granted.

    Having a doctor validate our misery is fine and dandy, only if we want to stay miserable, we are in control to our feeling better we just dont always know iit.

    Please check out the post: Take Charge of My MS,  
  • MS_Navigators
    Hi egibbs6,

    I sure hope you get some answers soon.  While MS can be difficult to diagnose, there are specific clinical criteria that must be met for a diagnosis, you can check that out here:
    Diagnostic Criteria

    Have you seen a neurologist with MS experience?  If you'd like to pursue another opinion, you can view a list of doctors using this search tool: 
    Find Doctors and Resources Tool