@juliebc82Β 

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juliebc82

In a living nightmare.

Stable and improved incredibly on Tysabri IV for 15 years. Then switched to a different brand, named Tyruko, and all the progress of my improvements completely undone, and worse. Became so much more disabled. After a few months I realised the pattern of my downfall was down to the switch to Tyruko. I had to fight to get Tysabri Iv back, it was hard work, but got it back. However, by this point my consultant decided that my decline was my change in ms, that I am now SPMS. Even though when I was back on Tysabri for 5 months, I improved dramatically! Now, I only realised it was doing its magic after around 3 months, when it occurred to me that I was actually walking upright when I was on the stairs at home. Whereas I was literally crawling up them during my time on Tyruko. I informed my consultant of this marked improvement, but he didn't want to know. He refused to see that this was my body reacting and working on an immunotherapy. Meaning my MS is still inflammatory. I suaght a second opinion from another neurologist. I paid privately. He came to the same conclusion as me. He said himself and team agree that I am still RRMS. Again my consultant did not react well to the 2nd opinion when I sent it to him. (The 2nd neuro, ranks a lot higher than him too.) So right now, I am on a treatment for SPMS, Siponomod, and like the title states, so feel like I am in a never ending nightmare. I have declined so much that I cannot find the words for it. I am so, so sad.
@jona
Β 

It really sounds like a nightmare! So sorry you have to use up your strength for this fight! So strange that your Neurologist can just ignore the second opinion and continue as if nothing happened? And the second can't prescribe DMTs for RRMS? Hope there will occurr an unexpected light. πŸ€πŸ™πŸ˜Ÿ

@Steve5

So sorry you are going through this. I can’t say I understand the healthcare system in the UK. In the US it simply be your new neurologist writes the prescription and done. Each system seems to have its strengths and weaknesses. Praying that you find the resolution you need. Keep strong and keep fighting. You are worth it. God bless.

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