← Return to Multiple Sclerosis (MS) - please introduce yourself

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@tonyiarobinson

Hi, my name is Tonyia and I have been diagnosed with MS for 37 years. Symptoms started in college but I was diagnosed with mono-like syndrome. I was diagnosed with relapsing- remitting MS and became worse after birth of 2nd child. I was employed as an engineer for 24 years until I had horrible spine pain (paraspinal muscle spasms only relieved by Botox injections). I mostly suffered from pain, muscle spasms, rigidity, neuropathy. I had an episode of blurred vision. Most relapses I experienced numbness, weakness, neuropathy (right, left or both sides of my body, but worse in my hands). I was blessed to remit so I could play oboe, do gardening, ceramics, bike rides, short hikes unless it wasn’t too hot ( heat sensitive). Sometimes a cooling (ice) vest helped me stay out. But if too warm, I did indoor activities like movies, plays, concerts or visit museums/galleries. In last 5 years or so, I now have active secondary progressive MS. Which has slowed me down; loss stamina and fatigue easier; muscle spasms, pain and rigidity is much worse - some time’s debilitating. I had to get a knee replacement for damage in my knee and contracture (couldn’t straighten my right leg to walk). I tried various DMTs: Betaseron, Avonex, Copaxone and Gilenya. I stayed on Copaxone until now we assessing whether to start me on Ocrevus to help manage my MS. My recent relapse was after mother passed away 9/2020 and terrible business with settling her estate with 2 younger brothers. Now both parents and a older/younger sister are dead. I miss my mom and older sister; we talked about everything and shared same hobbies/interests. I had my worse relapse in 30 years after settling mom’s estate. Loss father-in-law one month after my mom; too much sorrow. I have remitted mostly, new lesion located in frontal lobes, worse muscle spasms and sciatica from piriformis syndrome. I feel I have progressed more during the Covid pandemic; more isolation and less physical exercise and activity. I did have a right bunionectomy and a right knee replacement (improved walking and climbing steps). I had eye surgery to cosmetically move my right eye; nerves causing it to drift to the right more. It made my children and their friends happier for me. (All boys - smile). My stamina and fatigue is worse which frustrates me. I can play oboe but very exhausting after 1 hour. Cognitive skills are a little slower: word recall. I do enjoy reading/listening to books and listening to music, and still garden but very slowly.

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Replies to "Hi, my name is Tonyia and I have been diagnosed with MS for 37 years. Symptoms..."

Now listening to you describe years and stages and symptoms of Ms/ I see myself/I have denied this for years due to other health problems-but the terrible fatigue with little exertion and the awful stiffness has no other explanation at this point/ combined with everything else my life is totally different now/I am a different person/