My MSAA Community
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Tell us about your June appointments

Does anyone have neurologist or other appointments coming up in June and would like to share? I know I always appreciate the thoughts, prayers on my behalf, and comments I receive concerning appointments. Besides, it reminds me to look at my own calendar!

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Im having my Tysabri tomorrow I think it's my 5th infusion xxxx

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Good luck tomorrow janetb1968

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I hope it goes well!

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#5 Hope all goes well, Let us know how it goes, Blessings to you!

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Good luck Janet and wish you well 👍🙏😉🐾 Ken

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Janet, here’s hoping and praying the infusion goes well. Take time to rest when you get home. How many infusions to you have to have ? Blessings Jimeka 🦋 🍫 🤗

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I'm just having a brew the cannula is in just waiting for the juice I don't know how many u have. I'm JCV positive but very very low and have my bloods done regularly at the centre I go to at Royal Preston Hospital xxx

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I don’t have any. You are very brave. 🤗

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Praying your infusion goes well

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🤣🤣🤗💕

I so luv you 🤣

J🌠

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I have an appt next Tuesday to see my neurologist psychiatrist. I need to put my thoughts and questions on paper. I am really grateful to all of you at this site. This is my only social media; I cancelled facebook right before I got diagnosed...lol. I would get extremely peeved (MS peeking out). Blessings Cynthia

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I only got Fb for the AMA. I have 3 ppl on it.😀 I still hate it. 🤣

Start writing CynthiaS 😊 have you tried

mymsaa.org/msaa-community/m...

The My MS Manager?

As a member of the MS community, My MS Manager™ allows you to:

Track disease activity

Store medical information

Generate charts and reports across various metrics like treatments, moods, symptoms, and more.

Give it a shot! 🤗💕

Good luck at your app!

J🌠

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I usually don't download or give access to anyone. Before I got MS I told my adult and only child my son that I want to live off the grid. The only communication would be thru the postal service and to write in cursive. That way if intercepted they won't be able to read. Hahaha I will consider your suggestion J. Thank you

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I also dont do Facebook, there can be so much negativity and dealing with enough as it already is. When trying to stay positive I don't really need to know about trivial stuff. Hope and pray your appointment goes well.

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There are some good things on FB, but it seems as though folks tend to revert to 6th grade when on there!

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Consultation at Johns Hopkins. Been on Aubagio 1 1/2 years and my recent MRI showed progression. Hope he has a perspective/option for me. My local neurologist wants me to stay the course.

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I hope you get good news and a better idea about the right treatment if Aubagio isn’t working well.

Is that their MS Center?

Let us know how it went.

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Yes. It’s the MS Center. This is the second time I’ll be seeing Dr. McArthur. He seemed quite knowledgeable when I saw him the first time.

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My appointment went "well". The doctor is VERY personable and a good communicator and answers all my questions. Because of new lesions on my MRI from February (ugh) and also new symptoms, which started in May, he recommends moving from Augabio to Ocrevus. He shared that I could see his PA (who works out of an office which will be a bit closer to my home) to look into getting started on this medication. JC antibody test came back positive (3.77)...not sure if that result will lead them to say I shouldn't go on Ocrevus?? I did well for many years on Rebif, but he doesn't want me to go back to that.

I am also concerned about only have neurological care that is out of state and 1 hour from my home, rather than a "local" neurologist. I wonder how many people don't have a "local" neurologist....and only a neurologist who is out of state or out of their local area?

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I've heard that there is far less concern about the JC tests in regard to Ocrevus, but that's a great question for your doctor.

Your issue with finding a local neurologist at all, let alone one who specializes in MS, is a problem so many folks have. I'm thrilled, however, that you really like the neurologist you're seeing and that there is an option of seeing his PA. Will you have to travel far to get to the infusion locality?

Please do let us know about your road to getting Ocrevus and about your infusions. I pray the process goes smoothly.

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Thank you! The doc said that he arranges for Ocrevus infusions all "over the place" (I'm assuming, since he's with Johns Hopkins, there is a way to get approval for infusions in other locations?).

It is also my understanding there is less concern about JC antibodies and risk of PML with Ocrevus (I hope that's correct?).

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I have a yearly followup with the endocrinologist (hypothyroidism). I also have the first of four classes on learning coping strategies for stress. This is through the mental health clinic in primary care. I really need better coping strategies so I'm hoping this will be a good class.

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I hope you’ll share what you learn, since nearly all of us could use some good ideas in stress management.

Is your hypothyroidism well controlled now?

Let us know how it went.

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My hypothyroidism wasn't well controlled until 2016. He realized I was seesawing back and forth and added an additional medication. So for the first time I didn't end up stopping treatment because I felt worse.

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I have my thrice yearly optometrist visit. Exciting, I know. This may be the one where he moves me to being seen every three months. I have stupid non-MS related medical eye issues, so he's watching me like a hawk. At least insurance covers it due to it being medical.

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Isn’t it marvelous when insurance works? Have a great appointment and bring back some good news.

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I doubt it. He's already set the stage to expect more eye surgery in my near future. Right eye pressure is being recorded as going higher. Already had laser iridotomy on both eyes in 2014, so I'm looking at cataract surgery without having cataracts. At least options are available to me.

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Next week I have my feeding tube replacement on Monday. Easy procedure to do only takes about fifteen minutes and no drugs. Little pain but not bad, we are all use to pain. Hope everyone has a wonderful day 👍🙏😉🐾Ken

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I wish you didn’t have to deal with all that on top of everything else. You are amazing with your attitude and resilience.

I’ll be praying for an easier experience.

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I have another round of Ocrevus coming up. (#2) I’m hoping for some kind of change to my progression. So far it doesn’t appear to be doing anything.

But then again, what else is there?

C’est la vie.

Craig

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I'm encouraged by reading posts in which people have shown improvement long after a few infusions. I sure hope that becomes your experience, too.

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I have a follow up on the 20th. May get referred for another MRI but I can't afford it. My deductible is $7,500. Have progressed to tingling in my arms and I can't twist off a new cap on a milk jug anymore. Hands getting a bit weaker. Such is life...

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Does MSAA have something for you with MRI assistance?

mymsaa.org/msaa-help/mri/

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I'm so sorry mrsmike9buffering 💜 I hope you can find an assistance program so that you can get your needed MRI

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Have you tried to get a grant? MS One on One helped me with finding one👍 🐾 Ken

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Not yet. We shall see how things go...

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I'm having my 3rd ( technically 4th due to the initial infusion split in two half doses) of Ocrevus on Tuesday the 5th.

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Allen, you're in my prayers for not only the halting of progression, but improvement!

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Thank you greaterexp, AI actually have been in a little better spirits since starting Modanifil. Having a little more strength and energy to get some things accomplished goes a very long way to staying positive. Even just little stuff, anything I can accomplish makes me feel better that I'm not just staring at the pile of dishes considering putting them all in a trash bag and be done with it. 😂 yes there have been times I have considered it! LOL I would bet I'm not the only one who has felt that way at times! Then I think, well what am I going to eat from and what will I cook with then? Maybe I will just go completly vegan and just eat vegetables how they are...might not be bad forme but then again I would probably only be able to do that for a very short time!!!

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Ever broke a dish just cause you didn't want to wash it? 😟🤣😂

J🌠

Now of course I would never do that, once... I have done it twice.😁

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Yearly MRI check up is this Sunday. I have not been diagnosed and I will be anxiously waiting on this years view inside my head!

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Greaterexp, it's Fancy1959 and I the list is long for June! Today is June 1st I had my pre-operation physical with my family doctor. That took over an hour in Monday I still have to go get a chest x-ray. On Monday, June 4thh I also have to go get a bone density test done at the surgeon's office. After that I'll go get my chest x-ray. On Thursday, June 7th, I go to the hospital finish my pre-operation testing at the hospital needs to do. Then on June 18th I have to go back to the surgeons for my last pre-check before surgery. Then on June 19th I have my I knee operated on. It's going to be an outpatient procedure, I hope, but only time will tell.

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Good luck and I hope that things go well 👍 Let us know how it goes and prayers are with you 🙏😉🐾 Ken

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My, you keep awfully busy! You’re in my prayers.

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Neuro apt on the 27th. Was supposed to see my pcp but they canceled until august

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