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Wasted Time.

Seems I've wasted 10 plus years waiting for a diagnosis. Now I have one how do I approach that diagnosis with family, friends and work?

  1. Hi, . At the risk of sounding Pollyanna-ish, I hate to say that you wasted 10 plus years waiting for a diagnosis. You sure didn't waste that time. Perhaps the medical community failed you and kept you waiting years for a proper diagnosis, but I hate to say it was a waste. Frustrating? Definitely? A poor use of your valuable time? Definitely. Time wasted that could have been used on treatment for your symptoms? Yep. But you, personally, did not waste the time.

    That said, your own discernment and knowledge of your friends, family, and coworkers will be the best guide for how, when, and IF to tell folks about your diagnosis. You are not under any obligation to tell *anyone* about your diagnosis, although it may make your life easier to tell those closest to you and, possibly, your employer, if it comes to that. There are definite pros and cons for informing your workplace, which we can get into, if you would like.

    Again, it's your diagnosis and you can pick the best time and method for telling people. Are you worried that people won't believe your diagnosis? Or that they will treat you differently?

    Being newly diagnosed can be very overwhelming, even if you have been waiting on a diagnosis for years. It's a lot to take in. And it's okay to take some time to process and get your bearings.

    I'm sorry I don't have a clear "Here's the best way to tell people about your diagnosis" answer, but, like much of life, it's not that clearcut and easy.

    Please know if you want to talk this out here, I'm happy to brainstorm some suggestions with you or to just be here to let you vent or process things as you need.

    Best, Erin, Team Member.

    1. I know how you feel.
      I started with depression when I was pregnant with my first child.
      Pre pregnancy I was 12stone, by the time i gave birth in the March 1991 I was 9stone.
      In November 1991, eight months after my son was born, now weighing only 6stone, I collapsed, rushed into hospital initially unconscious!
      Couldn't stand, walk or talk. Was as if I'd had a stroke. Took me 6 weeks in hospital to recover, learning to walk and talk again.
      I had an Mri and Lumber punctures at that time in November 1991.
      Even then there were lesions in both brain and spine showing on my MRi and I had a positive lumbar puncture. Diagnosis: Possibly MS! Single episode!
      Run on 17 years of seeing an neurologist yearly to 2008!
      Although back on my feet, some of the problems hadn't gone away and was getting worse, depression came back and I had to give up my full time job.
      Another Mri and positive lumbar puncture. The results from the first round of tests at a different hospital had been lost!!!
      Diagnose: Possibly MS, single episode! They will not except this was the second episode 😭
      Only in 2021 did I get - "I personally can't see any changes on your Mri, by the scanner lady can, so we might as well say its MS!" And I'm sure that was because we're were in an pandemic.
      The depression is a daily battle. 😪

  2. Hi the exact same happened to me, 10 years of being mistakenly treated for arthritis of the spine. Eventually the pain relief clinic suspected MS and asked me to speak to my GP and ask him to refer me for an MRI. At this point I wasn’t aware of the PR Clinic suspected MS. So off I go to my GP and explained the situation.I was shocked when my GP bolted upright in his chair and said in a loud voice “do you realise how much an MRI costs, it’s all very well for them suggesting this why do they not arrange it”.
    I felt like crying as I was really mortified, he left me shaken.
    I eventually got the MRI & lumbar puncture which revealed MS. Much later the neurologist informed me it was secondary progressive.
    My GP never apologised for his unacceptable behaviour. After that i changed to another Doctor.
    I’ve had rotten luck with my neurologist too. I didn’t go back to her after her uncaring, flippant remarks. She actually found it funny when I told her how I felt.
    What’s wrong with these people?
    Because it took so long, 10 years, to get a diagnosis I missed the opportunity to have disease modifying treatment.
    I don’t bother with health professionals anymore as they have let me down so badly.
    No wonder I’m depressed.

    1. , ugh! I am so sorry that happened to you! And good grief; what terrible bedside manner your old GP had! And, I have learned that sometimes the smartest people (book smarts, I mean) don't have the best personalities. Mind you, this is anecdotal evidence on my part, but it seems to be a common issue with doctors and surgeons. They're super smart and knowledgeable, but not so good at empathy and understanding. That said, a few of our members have found gifted, smart, AND empathetic neurologists, but that doesn't seem to be the norm (again, this is purely anecdotal evidence on my part 😉 ).

      I am sorry much of the professional medical community let you down. Please know we understand and we know how challenging living with a chronic condition like MS.

      You mention you're depressed. I feel compelled to ask (and please forgive my nosiness); do you feel like your depression is overwhelming? Do you have anyone in your life you can talk to about your feelings? Please know you're always welcome to vent here anytime!

      Best, Erin, Team Member.

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