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Moving Me and My MS

At 50 years old I have some one new in my life and he is way more than I could hope for and everyone loves him.
He understands that I have MS and all the monsterous things that happen to. I went to visit him this summer and it was the vacation I needed. Got all the breaks I needed and wordshe hooked me in were not the words I needed to hear but heept asking me up until I boarded the plane I didn't want to get on to leave. "Are you coming back for good next time.". When I told him I didn't want to leave, he gave me a brand new shiny... KEY! You would have thought it was a 5 carat dimond ring. I keep it right by my heart. Right over it literally. LOL! HA!

So now my other thoughts are how will I get my narchotic meds?? I'm not addicted but if you have horrible nagging, disease fatigue. You know what I mean. After the medicine I had been taking started making me violently nauseous, I had to find something new and to do that, my doctor at the time started testing every stimulant she could think of. They all made me sick to my stomach and one made me so sick, I could not eat the entire gay. The last medication was Adderall. My doctor gave me 3 pills and instructed me to start with one pill and take no more than 2. It felt great. I felt alive and I felt so great, I cleaned my whole house all by myself! I was proud of me. Fast forward to now. Realize that since I first started the Adderall, I had never asked that the dosage be in creased until now. I asked my new Neuro and he only increased it from 35 mg. to 40. Note I still fall asleep watching the news or a talk show and it's maddening. My neuro also told me not to ask that it be increased any more because he didn't believe it would do any good. EXCUSE ME? This I don't like because what he might see in others does not hold true for me. Besides if I'm dragging and I cannot think correctly. In rare occasions, I even forget to take it, that's when I only notice that I did because I'm nodding off while I sit outside listening to music or watch a video. I want to know when I seek a new doctor, should he/she try to eliminate some of my meds based on what he/she thinks is best? I would rather take an injection that be infused because of my own belief that I don't like medicines that are new on the market. Never have. That's just me. But I would just like to transition as seamlessly as possible and I'm open to helpful suggestions. Thank you all for reading my post and I hope I'm doing it right.😊

Felicia

  1. Hi Felicia, your doctor should listen to what you want and need, and consider how much your fatigue level is affecting your quality of life. They should keep trying medications until something works for you, and then adjust the dose as needed to give you the best result.

    If you go to a doctor that decides they know better than you about what meds you should stop taking, run away. Your doctor should listen to you. I consider my neurologist to be more of a consultant, and I get the last word on what I'm willing to take.

    As far as trying a new disease-modifying drug, it's important that you know what delivery system you prefer or are willing to try. There are also other features of the drugs to consider. There are a lot of new DMDs now and your doctor can be very helpful in advising which ones are best for your particular challenges. You have a choice between pills, infusions, and injections. There are long-term risks and side effects for each of them.

    If you want more information on DMDs, I'd suggest watching Dr. Aaron Boster explain them on his youtube channel: https://www.youtube.com/watch?v=KxKWwqbb2XM&t=9s

    We're here to help you in any way we can, Felicia. Hope this helps. Best, Kim, moderator

    1. You have to trust your doctor and he has to listen to you. I was on Tysabari for nine years and kept asking to try something else. He figured I needed more antidepressants - I was taking way too many pills and had non-stop diarrhea for two months. I can't tell you how miserable I was - the gastroenterologist did tests and then told me all this trouble was because I was taking too many pills. I immediately got a new neurologist, who understands me and tries to help me - I should never have been on Tysabari for nine years. Anyhow, he started me on Mavenclad and so far, I have gone through the first dose. Maybe you should mention to your neurologist. After two months of one pill a day for those two months, you are good to go for the rest of the year. 10 months of freedom as compared to my monthly infusioins I went through. Good luck. Carol

      1. FelicityO

        Hi, I'm supposed to move too. We have tried, my husband has been lazy, but he retired a year ago, but trying to get him to throw stuff away has been impossible. Finally, he is starting to get it going. The problem is, last year, I think I was pretty much either walking or using a cane, and now, I can't even say it. I can't walk at all. I am crushed and angry, we took to long to do this and I really have to get out of here. I have 22 steps to go down to get out of the condo - this has made my loneliness and isolation even worse! I pray that you and your MS will not encounter this in your new life!

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