My name is Maxie, I was diagnose with MS 04/10/2019. I was in denial and still can not believe I have MS. I was prescribe several different types of medication and I was having bad reaction to the different drugs. I was complaining to my neurologist and it seems she was not listening to my concerns. She said we have to try different medication until we find the medication that works. I decided to change doctor and hospital. I went to U of M Hospital and my new doctor ran some more blood work and discover I had NMO which is rare disease called neuromylitis optica disease and it's in the MS family. I was devastated to have been given the wrong medication for a year. My neurologist ran the blood work three different times and the results was the same. She sent my lab work to the Mayo Clinic in Rochester Minnesota and the physician who specialized in this autoimmune disease. Dr. Sean Pittock contact me an ask me can I come to Minnesota for a consultation. He confirm my new found disease 08/2020. Once again I'm angry and very upset. I can not believe what is going on with me. Well I drive to the Mayo clinic twice a year for infusion that cost 450,000.00 per year. Thank God my insurance cover most of the cost but it is very difficult. So far the infusion that is intravenously given and it seems to be helping me so far. I appreciate you guys reading my story. I'm glad to get this much off my mind.
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Maxx57
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MS sucks and it’s scary you had a rough start but sounds like you found the right doctor. Stay strong and positive MS Warriors have two battles physical and mental keep moving, prayers coming your way
Thank you for your support. You're right, it's definitely physical and mentally. It's very hard to stay positive but reading different messages helps me mentally to stay positive. I appreciate your kind words. 😪
Prayers are with you and hopefully you get feeling better 🙏 Thought MS meds were spendy 🤑 but $450,000 year is crazy. Hopefully things work out 🤞👍🙏😉🤗 Ken 🐾🐾
so sorry for all that you have gone thru ..so glad you got another doctor to test and to find our what was going on ...we all have to stand up and find our what is going on ..so glad that it is going to be under control to what ever is going on ...we all have to stand up and fight for our bodies are ours and need to be able to live our life to the best that we can ...take care and yes it is okay to complain very proud of you and we are here to listen ...stay strong and still live your life......love and much happiness...
Thank you. Self care is very important, especially when you have physician that think they know your body better than you. Please try to stay well and God bless you.💪🙏
i can relate to that for so many that i have had and at times still have to use when it is necessary ...living in a rural town sometimes we do and then go get another and more ...ahhahahha,....but yes we do and should always stand up for what we do believe is going on ...sure takes a long time sometimes to find that right doctor that is willing to take the chance and check out what we are trying to tell them and it also can save your life ....keep going no matte what is going on you can do it ...love and much happiness in what ever you are doing or trying to do because of MS it is sometimes harder but will find a way ...way to go ....
Sometime life can be difficult for me and its hard to stay positive because I'm still trying to cope with my disease. We are all in this together. Much love and remember I'm here for all you guys.
oh yes it can but you have to be positive that you can do this to have as normal as possible ...i know it feels like it never will be the same but normal life even with out this changes ...so we do what we can to do it and still enjoy life...good prayers to help you thru this new journey in your life and help you and everyone around you to go on and have lots of fun and doing what is that it is you want to do ...there really are ways to do it and still enjoying life .....you sound really strong and can fight this .....love and much happiness....
i'm so sorry. one of my biggest worries about limboland is that i'm worsening when i could be receiving treatment. i know about nmo b/c i saw a neuro who researched it for 6 years. he reaaally wanted me to have it so he could study me, but i don't.
i'm glad you found out and can start receiving treatment for nmo.
Thank you and I appreciate you. Have been tested for NMO? I'm receiving treatment called Inebilizumab-cdon. Please get tested. There are a lot of MS patient whom might have NMO and its easy to say, oh you have MS. Please get yourself tested. I rather know than not know. Ask your doctor regarding the medication I'm on. Maybe with the help of our lord, we can stop the disease from getting worst. 🙏🙏🙏🙏🙏🙏
yes, the doctor i mentioned tested me every few months for about 3 years and it always came back negative. i understood for a while b/c the efficacy of the test is low, but years? years later and he wouldn't consider any other diagnosis.😡
Hi, my ms neuro also suspected and tested me for NMO for several years. It always came back negative. She still thinks there is a chance it might be NMO because there is like a 30% chance of a false negative. Back then the treatment for NMO was rituximab and I am now on ocrevus, very similar, so she feels I am covered either way.
Yes, several of the ms DMT's are actually harmful if it is nmo rather then ms.
I'm glad you finally got an accurate diagnosis and treatment.
Thank you. I appreciate it. I try to train my mind to see the good, that I'm still alive. I thank god every day for waking me up. We all have to stay strong.
So sorry for your misdiagnosis, unfortunately it happens. In my old age want a diagnosis before taking meds, but not always easy to get.I know frustration before get.
Glad you now have good drs familiar with disease. That is part of battle.
Thank you. Yes, I cannot believe the price of medication. It's out of control. Their must be a way to address the problems we have with pharmaceutical companies. I appreciate all your kind words. Please stay strong.🙏
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I'm new here..Newly diagnosed with MS
Newly Diagnosed
I Missed You Guys!!😭😭
