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Neuro appt today - what's failing...don't know

I was on Tysabri for 5 years and it kept my MS fairly stable. But since I'm JCV+ and my index kept rising, I had to switch to something else and Ocrevus seemed like the only real option for me. My neuro had me wait 12 weeks from my last Tysabri infusion to the first Ocrevus infusion. I know it takes awhile for Ocrevus to show any affect. The last couple of weeks, I've had more trouble with the nystagmus in my eyes so I finally booked an appt with my neuro for later this afternoon.

I've also been trying some new things like acupuncture to help with the neuropathy so I feel like its going to be impossible to figure out what's causing my problem. Is it Ocrevus not working? Is it the 12 week washout that left me vulnerable to a flare-up? Is it the acupuncture causing issues? Is it all the stress in my life at the moment? (Stress alone has caused symptom flareups before.) One thing I know...its not the meditation I've recently been doing!! ;)

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Raingrrl so sorry you are feeling badly...hopefully it's stress and your healthy lifestyle efforts will pay off soon.

At least that's what my personal plan is for my symptom creep

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Thanks Erash. Neuro is sending me for an MRI just to be cautious. If it shows new lesions or activity, then we will discus some solumedrol. Yuck.

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I vote for stress, followed by washout. Hope you are feeling better soon.

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Raingrrl, Sounds like you are really struggling right now! I'm sending good thoughts your way and hope for some relief. I had acupuncture several years ago and did not suffer the things you mentioned. My guess would be that acupuncture is not the culprit.

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Yeah..I'm pretty sure acupuncture isn't the culprit nor is the other crazy treatment she has given me to get the blood flowing. Its likely either stress or the period between my last Tysabri and my first Ocrevus. But...I get to go have another MRI to try and figure out if something new is brewing.

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I think lack of meds for 12 weeks and stress could set off MS acerbation 🤷🏼‍♂️ Just my thought 💭 Hope you get feeling better 👍🙏🐾 Ken

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Thanks Ken! I'm thinking the same. Not happy that I have to get an MRI just as my deductible rolled over and starts fresh on March 1. Which basically means I pay for the MRI out of pocket. Unfortunately...there is no other way to know if this is just stress messing with me or if it is some progression.

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What about help thru MSAA with MRI🤷🏼‍♂️ I know a couple weeks ago they were offered help depending on income 🤷🏼‍♂️ 👍🙏🐾🐩 Ken

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Thanks Ken but I don’t think I qualify.

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I know that for me, stress is my biggest enemy for triggering MS symptoms from ughhh, just another day to arrrrrrggggghhhhh 😓🙁😞😢😢😭😭😭😨😭😭😭😨🤤😩😨😨😨😭😭😭😢😧 and on and on and on.... sssying yes to happiness sometimes meaning saying no to things and people that stress you out. From the voice of experience, I know that's easier said than done. Hopeful and praying you can get back to your baseline soon.

🙏

Allen

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Thanks Allen. Stress has often been my biggest enemy and is the reason why I had to retire when I did. Work stress kept elevating my symptoms. I've been working practicing a more positive mindset while trying to figure out what to do with myself in retirement. That's why I took up meditation too. The biggest stressor right now has to do with my income. I don't know if my LTD pay will continue past June. Its employer based so its under evaluation. Makes me nervous.

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I was forced into a way early retirement (disability) and I, at first also, wondered how i was going to keep from going stark-raving mad! However as I was consolidating and liquidating my assets. I happened across a box of things I hadn't opened in years. I came across a house of blues harmonica I had picked up in Chicago during one of my visits. I remember bringing it home and tried playing it for about a week. (Maybe it was a week most likely only a few days) I looked at it and said to myself, what have I got to loose, it's not like I have anything else better to do....and before you know it. I could actually play it. After not very long at all I could see people's smiles when I started playing, then before long those smiles turned into everyone stops whatever it is there doing to listen to me. I can captivate a entire room at my whim. Please don't let the changes get you to far down. I came across a saying that was about the time we are ready to quit and give up is usually the moment right before a miracle happens. I get mine every day, even the tough ones.

Thoughts and prayers,

Allen

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I like that saying...I think I'll put it up where I can see it every day as a reminder.

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When I look back, all my attacks came after high stress periods. Meditation will definitely help. I think so will the acupuncture. A healthy diet is good too. Good luck and let us know how you make out.

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Thanks pihokken. I am on a healthier path these days with the meditation, acupuncture and switching up my diet starting last July. I've actually lost 20+ lbs and at only 5 feet tall...that has made a difference. I've also been taking walks when I can and that has helped too. Unfortunately, stress has always been my kryptonite and I have lots at the moment.

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Raingrrl it's really hard to not get stressed sometimes. It's like ms it comes in many shapes and forms. I used to have acupuncture and that helped relax me but I just stuck to the needles, I didn't have any of the other stuff they offered, like the cups etc. If you find yourself getting stressed, just come here and vent, hope you can get help with the MRI. Blessings Jimeka 🦋

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Thanks jimeka

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For some reason, I thought your neuro appt was on Tuesday—at least that’s what I put in my calendar. I’m happy you got in so soon. Sorry about the MRI and expense, though—not the best timing. I just hope your doc can figure it out and that you feel better (steroids if needed) soon! 💞

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Thanks Tutu! I was surprised to get in so quickly. He is also going to change another med if insurance doesn’t block it. The pharmacy already sent me a message that there is an insurance problem. I hate how difficult insurance makes things.

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I don’t think insurance even reads the notes and realize how big of a problem denial is 🤬 They are not doctors and should let the real doctor do his job that they are trained to do 👍🤬. I know my doctors are getting fed up with denial and prior approval🤬 They prescribe what they think is best for that patient 👍 If you don’t have stress you will after dealing with insurance 🤬 Wish you well and good luck with insurance 👍🙏🐾🐩🐶🐕 Ken

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Thanks Ken...its so true that if you don't have stress before dealing with the insurance companies you will from how they operate.

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I agree Kenu talking from a Brits point of view I think US insurance is appalling! The NHS here in England is not perfect far from it but u get ur medicines. Insurance do not know better than docs and have zilch medical knowledge and how dare they act like they do! I just think it's awful 😐😐😐😐

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I have found that calling the insurance company directly (and speaking calmly and sweetly!) always has gotten the ball rolling much more quickly. Most of the people I've talked with were very kind and understanding and worked hard and quickly to resolve issues. The same with specialty pharmacies.

I pray your symptoms and insurance woes get resolved quickly.

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I'm going to try the drug first by getting it at a compounding pharmacy and paying for it out of pocket. Might cost less that way than with insurance because the branded name is soooooo pricy. If it works, then I'll have to decide if its worth the hassle of trying to get it through a regular pharmacy or just keep getting it from the compounding pharmacy.

I don't get why this has to be so complex and add to all the stuff we already deal with. (Its really all about money and profits. I'm so tired of hitting a wall of greed every time I turn around.)

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Which medicine are you referring to? I never would have thought of looking at a compounding pharmacy for many meds, but it's a great thought!

I sure hope you get some answers quickly. Keep us posted, please!

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The RX is for a drug called: Dalfampridine or 4-aminopyridine. I think most MS'ers probably take it for walking but it also can help with nystagmus according to my neuro. He is thinking that my picky insurance will deny it because I don't need walking help that much...my vision is the issue. So..he suggested getting it at a compounding pharmacy for $75 instead of the $1500 that it would cost for the branded name at a regular pharmacy. Since I just want to see if it works first, it makes sense to me to invest $75 and no sweat/stress to try it before deciding if I want to battle Aetna yet again.

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Wow! I wonder what other drugs could be obtained by the same method.

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Hope things improve for u hun bet it's so worrying for u if I could give u a big hug I would. Thinking about u and praying for u xxxxx 😊

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raingrrl nice to meet you, stress does so very much to me.....i cannot do meds because of the same problem but i notice if routine is thrown off by stress related issues ive been basically in bed on couch even appetitie probs with MS tricks...How to deal with stress...it will come...and going off even asprin on a daily basis throws me chemically into shock.Best wishes..sometimes its minute by minute...and saying....this too shall pass ...over and over...I miss you all...

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Raingrrl can't say anything more than what everyone else has said.

Sending you calm thoughts and good luck.💕

J🌠

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Thoughts and prayers headed your way!!!

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Praying you feel better soon. I’m starting steroids now. Hope they work.

Donnie

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I hope you remember to ask your neurologist all those questions today! My husband thought my last relapse was because I did a half marathon and she was quick to explain how it was not. Yay for meditation! I have not for 3 days, so thank you for the reminder. Please let us know what your MD says and I hope you start feeling better soon. 😘

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Raingrrl I'm sorry you are having so many troubles. Hope your neuro appointment gets you some answers. I think the stress and not having any meds for the wash out period could be the culprit. Stress has always been the culprit for me for relapses and for MS to come out from hiding. I hope that you can get help with your MRI costs.

Jessie

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Raingrrl, it's Fancy1959. Your story and my story has a lot of similarities. After trying my first therapy and getting worse rapidly I was switched on to tysabri as well. Like you are so quite a bit of improvement and I was tickled to death. Again like you I was JC+ too. I stayed on to Tysabri the first time for about a year-and-a-half. My husband was beside himself because of the risk of PML. The day that Tecfidera got approved and came on the market I was contacted and switched shortly thereafter. Sometime during my second-year on tecfidera I noticed I wasn't relapsing and remitting anymore I was just getting worse steadily. I went in and saw my doctor and he too pretty much wrote me off as a lost cause and he told me there was nothing more he could do for me with my MS. Even though I was JC positive he switch me back to to Tysabri and just left me on it which out watching my JC count. The Tysabri was not helping me at all like it did the first time I was on it. Sometime into the second round probably about 6 or 7 months I started to notice weird side effects immediately following my infusion. I became disoriented and I never have before, I tried to pass out twice, and I could not focus at all because it felt like my brain function was way off. After 4 months of consecutive increasing side effects I got scared to death and refused to take another infusion. It was several months later and several doses of steroids later that I got approved to start Ocrevus. In April I will take my second dose of ocrevus and each and every day I pray for more Improvement. The side effects that I experience are nil from the 4-Hour infusion and the drug itself!

Trust in yourself and if you notice things that are not normal fuss enough until action is taken. If your current neurologist has given up on you I encourage you to find another neurologist. There are many great neurologist out there that refused to give up on you. Reply back if you have trouble finding one and I will direct you to a resource that will help you in your search. Take care until we speak again. Good luck and thinking of you. I personally understand the anxiety, confusion, and fear you are now experiencing. You do not have to let a second great doctor give up on you. Life is too precious!

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