Your MS Diagnosis

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1. 

   pattiandbob

   January 22, 2019

   <p>My husband and I have been living with his MS diagnoses for about 40 years now. When he was first diagnosed there was nothing to do for it .. just survive it as best we could. Then 7 years later when he had a major flare up the neurologist "admitted" she had "lost" his file and that there were now treatments and he should have been on them years ago (sigh). We began the Rebif regime and it helped for a number of years. However his MS began to progress and he soon had to quit work. Sadly we got another "uninformed" neurologist and he took him off ALL medication saying nothing would work now. TWO years later things were getting bad and a friend who is a physician's assistant lined us up with a physiciatrist who recommended Bob see a MS specialist in Seattle. Off we went and he was immediately put of Tysabri. Sadly by then he was diagnosed as having Secondary Progressive MS and he had gone from walking to a cane to a walker and then to a wheelchair. He was on Tysabri for 8 years (which really slowed down the progression) but became JV positive and was taken off the Tysabri. He currently is on Ocrevus and we are "hopeful" he will not slide further. It's been pretty frustrating for him to go from full functional to needing help with everything (he can still feed himself if I cut up his foods) .. but thankfully he also has this amazing personality and character which makes life so much easier for both of us. I am his full time caregiver and wife and although we would love things to be different, we are happy.</p>

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   1. 

      Shelby Comito Admin

      January 22, 2019

      <p>Hi <inline-mention user-id="4052193" username="pattiandbob" class="bp-suggestions-mention"/> , thank you so much for sharing what you&apos;ve both been through. Your gracious perspective is so admirable, especially in light of some pretty unbelievably frustrating experiences. You are not alone in dealing with doctors who lack knowledge about MS. Although your husband is not newly diagnosed, this article explains why MS specialists make such a difference and why they can be so hard to find: <a href='https://multiplesclerosis.net/living-with-ms/my-advice-for-newly-diagnosed/' target='_blank' rel='noopener noreferrer nofollow'>https://multiplesclerosis.net/living-with-ms/my-advice-for-newly-diagnosed/</a> <br> I also invite you to share your story with the community if you feel comfortable doing so here: <a href='https://multiplesclerosis.net/stories/' target='_blank' rel='noopener noreferrer nofollow'>https://multiplesclerosis.net/stories/</a> <br> I know an online community can only be there for you in so many ways, but please know we are here for you and feel free to reach out anytime you need information or support or you have something to share. Thank you for being a part of our community! <br> Best, Shelby, <a href='http://MultipleSclerosis.net' target='_blank' rel='noopener noreferrer nofollow'>MultipleSclerosis.net</a> Team Member</p>

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