I have recently been speaking with lady from New York who goes by the Name of infusionarmy on Instagram. We will call her Megan. She has been telling me her story. I have asked if I may share it and she has agreed so her story is as follows
in March 2018 Megan was diagnosed with Relapsing Remitting Multiple Sclerosis after getting optic neuritis which left her blind in one eye. Megan tells me she saw 5 different neurologist because she was so unconvinced that it was MS as she didn’t have any other symptoms. It wasn’t until Megan had her 2nd MRI she accepted she had MS. Megan tells me of saying to her husband “that’s the disease where you just wither away until you die” at the ER (hospital) when she heard of the possibility of being diagnosed with MS. She tells me of a couple of bad experiences she had with some of the neurologist she has seen like the first one who told her “someone with chronic back pain would gladly change places with you” as she was crying. She tells me of another one who wouldn’t answer any of her questions when she was asking why her spinal tap (lumber puncher) was negative. And then she had another one who she tells me basically asked her “what was wrong with her?” While she was upset in the appointment. Megan had a two year old daughter at the time off diagnosis she tells me she was so scared when she lost the sight in her eye and all she could think about was what if the same thing happened in her other eye and she couldn’t watch her daughter grow up. In October 2018 Megan started Ocrevus which is an infusion every 6 months after your first 2 which are half doses. Ocrevus seems to be working for her as her new lesions which appeared in August have disappeared! And her others were not active!!! Hooray!! Although she tells me she is starting to suffer from anxiety which she has never been an anxious person and believes this is down to the MS
Speaking to Megan i get the sense she is quite a mentally strong person she’s told me she has great support from her husband and has been referred to a social worker who also supports her. Shes told me she will sometimes have a little cry and a moment but from talking to her that’s all i believe it to be a moment which we all have and are entitled too. Megan you are doing great! you seem so positive but should you ever need to reach out then please do not hesitate. However I would strongly advice seeking help for the anxiety. I know from my own experiences anxiety is no joke and if left untreated it can make your life hell. so please do not just brush it off. I wish you the best off luck with your MS and i hope it doesn’t get any worse for a very long time and you stay relapse free. I also wish you the best off luck with the Ocrevus i am glad to hear it seems to working for you and i hope this continues.
It has been a true pleasure talking to you and sharing each others stories. thank you for sharing your story with me. please stay strong and please stay in touch and keep me updated! And always remember you are not alone. more than 2.3 million people in the world have MS and although everyone’s MS is different we must stand together and support each other. If you have MS and you need some support I will always listen!
Also go and follow Infusionarmy (Megan) on Instagram