We appreciate knowing who has appointments each month and to know the outcomes. We learn so much from one another, and we sure like to support one another.
So let us know if you have any appointments in April.
Who has an appointment this month? - My MSAA Community
Who has an appointment this month?
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greaterexp
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74 Replies
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I have an appointment with oncologist next week for follow up on Throat Cancer 🤷🏼♂️Wish me well 🙏🐾Ken
We absolutely wish you the best. You're in my prayers. Let us know how it went.
Yes! Hope all goes well.
Best wishes that the appt goes well, Ken
I have my chiropractor and massage appointment next Monday...looking forward to that 
Jessie
Thanks for letting us know. I hope you get great results!
massage sounds good
CalfeeChickCommunityAmbassador
Appt. with Ms Nuero on April 17. Possibly will discuss going on DMT's.
@calfeechick r u anxious (good or bad) about that?
I need to do more research on DMT's, He had mentioned Rixutan as a possibility a year ago when I decided to just go on "Symptomatic Meds." Some one mentioned recently that Rixutan may increase the chance of a PML if you are JCV + which I am. Now it just seems like I'm having to take a combination of meds every 2-3 hours and I'm just tired of being tied to such a tight schedule.
Is it a relief to finally begin talking about DMT? Diagnosis clear yet?
I don't know if it's a relief, I wish it was easier to find out what the costs would be in advance as that is a big consideration. So far, all I know is I do have lesions in T-2 thru T-5 spinal, 20+ white spots in brain that have not changed in size or shape and no new ones since first MRI's in 2016, he won't classify them as MS and won't give me a stage as yet, so I don't even know if DMT's are something I should have. If I say any more abbreviations, I will have to post my definition list again
That is a big frustration to us all - the not knowing what costs will be, since insurance, Medicare, etc., and pharmacy copay assistance all having so many factors and contingencies. I so wish we could just talk with a live human being who could sort it all out for us.
Neuro 4/3 (and yes I am anxious --scared, because I may need to consider DMT Ocrevus. Lately, I'm aware of my MS most of the time and that's new for me 🙁
Cardio follow up 4/6
You're in my thoughts and prayers. I waver between excitement about Ocrevus and fear, too! My neuro only mentioned it, but she thinks I should stick with Copaxone until there are any signs of progression.
Let us know what you decide.
Awe, Hope it all goes better for you. Sending prayers for good results, Kiddo!
Greaterexp, I haven't received the actual infusion date yet but sometime in April I should be getting my second round of ocrevus. When I get the actual date I will be sure and let you know. I also have to go on April 24th back to my surgeon who did the reverse placement on my shoulder for my 4 month recheck. Fancy1959.
Lois52 Good luck and be sure to let us know 👍🙏🐾😉 Ken
Have neuro appt 4/10 follow up. Got to talk to him about the Cymbalta. I had to stop it because it made me totally worthless and stupid. I could barely make it to bathroom I was so zonked. I stopped it after a couple of weeks and 2 days later I was back to normal or as close as I get to normal. It helped with my shoulder pain I think but I really don’t remember much from that time period.😇😇
Donnie
That's pretty scary, Donnie! I'll be in prayer about the upcoming appt.
Thanks Erin it sure was scary. If my wife hadn’t mentioned something about it possibly being the problem I don’t know what would have happened.
Donnie
Your Sweetie is taking good care of you Donnie. Hope the doc can get you on something that prevents the zombie feeling.
I sure hope so cause Cymbalta sure helped my pain. He will probably go back with the 30 mg instead of 60 mg. I didn’t seem to have any problems with it but now we know what to watch. Notice I said we.😂😂. She has an eagle eye when medications are involved. I couldn’t see it when I was half comatose but she figured out the problem pretty darn quick.🤪😜
Donnie
CalfeeChickCommunityAmbassador
Please let us know how it goes, I started LDN last Oct. and it's made a big difference in my energy and focus. I still get fatigue in the afternoons though. I take it in the AM which works out better for me. Let me know if you have questions about it. Send private message. Lynn
I see surgeon for last apt from my surgery last year. Apt is april 26. Hoping he can tell me if the “frakenboob” will ever recover
Earlier today when this post came out... I was hooked up to an IV getting my 2nd dose to start on Rituxan. I saw the post, the Bendryl you get to start the process activated. I saw the post, chuckled to myself, wanted to respond..and out went my lights. Dream weaver called me out for 2 hours. Anywho, I am in the optimistic stage with Rituxan & will see how it goes. I also due Copaxone 3x's a week, steroids "as needed.. as of right now... no other doctor appointments or blood work needed for the month of April....I hope, probably jinxed myself..lol I certainly hope that all of you that have one appointment or another this month, that all informatio, news ect. received is positive and moves in the right direction! Wishing well for all!!
I see my MS neuro next Tuesday. Had all the bloodwork done today. Hopefully still JCV negative!
greaterexp , I'm seeing the neuro this month. She's still new to me. I've seen her once but that was some months ago. So far, so good, but I don't expect care from a neuro. My MS was diagnosed in 1980 when there as nothing a neuro could do but send you on your merry way. Since I'm no longer on Avonex or Copaxone, all that the neuro needs to do is just assess how I'm doing. This neuro would like to do a more complete MRI than ones I've had in the past. I'm not sure I want to do that. At this point there doesn't seem to be much of a reason for it.
I understand what you're saying. I wonder if having that information updated would still be a good thing, if nothing else for your own understanding. Hopefully your doctor will give you a clear explanation for doing it and help you make a good decision about having it done.
Let us know how it goes, won't you?
I will do that. If the doctor mentions the additional MRI again, we'll definitely discuss it. I'm open to the idea but not very open because getting there and back is a nuisance for me, and sometimes I leave the MRI machine with a very bad backache.
Hi greaterexp, I have an appt at the end of the month with my new MS specialist. This is my fourth doctor. I like him and I think he is the one I have been looking for. It will be 4 yrs since my diagnosis on July 24th, 2014. Today was my 1st day during acupuncture to help stimulate my nerves. I feel strange right now but felt so relaxed while doing it. I am hoping to feel better tomorrow. I hope all is well with you!
Blessings to all
I'm on my 3rd neurologist and I finally feel comfortable at the neurologists office! I want to write strongly worded letters to #1 & #2 (but I won't....). Glad you found a good one! I also find acupuncture very relaxing!
Glad you found a neurologist that you are comfortable with. This is very important. I never imagined me doing acupuncture. It is nothing like I expected it to be.
For what symptoms are you using the acupuncture? Is it helping?
I’m sorry it’s taken awhile to find a neurologist you’re comfortable with, but it must feel great.
What got you interested in acupuncture? Please let us know how it helps you!
Hi greaterexp,
Yes, it feels great! I know other MS patients who have been utilizing acupuncture and laser treatment and are benefiting from it. So, i figured it can not hurt. I will keep you inform.
Blessings
Not this month but I made the appointment today 😉
I have another nerve conduction study 5/8. This one on my right leg (last one was on my left arm, about a year and a half ago - that's how long it was between both "episodes"). Testing testing testing, always testing. (undiagnosed at this point).
Then we will talk about a new set of MRI's if negative nerve conduction.
I'm trying to write notes about questions I need to ask her about my trigeminal neuralgia. I can mostly deal with it so I haven't taken the medication yet. I started gabapentin for my nerve pain and I thought maybe it would help my face pain (it hasn't, it seems to help my older nerve pain from a year and a half ago that lingered but only sort of on the newest nerve pain, which is a bummer because it really bothers me). Lately though, those upper teeth are hurting badly off/on and I had a few horrific stabs above my eye, took my breath away. I've had zaps into my eyeball that hurt less. It's over so quickly but the fact they just lash out like that. I don't know. Meds meds meds, always more meds. I like to think the fact that I never took meds before I was 40 is a good thing, since it looks like the second half of my life will be done with a medicine chest full of prescriptions.
I’m so hopeful for you to get a diagnosis and for appropriate and helpful treatment. It’s been a long time coming.
I think most of us dislike needing medications, but I’m sure grateful for them when I need them.
Thanks for keeping updated.
I see my neurologist on April 2oth.
Is this a routine check? How are you doing?
Routine check - I go about 4-5 times a year. I am showing signs of a small allergy to the Rebif I am on, but not significant enough to stop the med. I will whine a little bit - I feel like I am in a constant relapse; my husband and I are not getting along well, and I may have to euthanize my dog today.....
You’ve got quite a load right now. I’m so sorry.
Is the Rebif working for you? Do you have any idea why you feel like you’re in a relapse?
You’re in my prayers. MS is tough enough, but these others problems add a great deal of weight. I wish I could take them off of you for a while.
You are so kind. I have been on Rebif since last August. I had a follow-up MRI in January and there are no changes right now. No news is good news?
That is great news about the MRI - very encouraging.
What has happened with your dog?
I hope your doctor has some answers for you about how you’re feeling. Does stress have a negative effect on your symptoms?
Keep us posted.
Good morning! Today, April 4 2018 is my first ocrevus treatment. Still nervous but I have read that a lot of you have said it was a breeze. I’m hoping mine is too.
Have a good day!!
I can attest to that......it was a walk in the park.....no side effects.....nothing...nada.....
Go get 'em! We're all cheering for a great experience!
My neuro visit: good news is MRIs stable. Bad news is my disease is progressing. Plan Solumedrol x 3 days, PT eval, blood work in preparation for likely initiation of Ocrevus. I am glad we are going to DO something as the progression has take a rapid decline recently.
It seems like you have a great neurologist who listens to you and pays attention to your issues. I'm so glad you are being proactive. Do you know when you will be able to begin the infusions? Have you had any PT before?
You're in my prayers for successful PT and treatment.
The poor neurologist spent an hour with me. I brought a page long list of symptoms and questions. But he is wonderful. A big teddy bear of a guy and for many years THE only MS specialist in town. He's in his 70s though and in semi-retirement and I worry about what I will do when he fully retires.
Yes, I had PT when I was first diagnosed and again @ 5 yrs ago when I developed foot drop and given an AFO. That was later determined to be from my back rather than MS and corrected by back surgery.
I'm not even going to contemplate starting Ocrevus until I finish teaching this semester (5 more weeks) but I will go ahead with the steroids and get the labs.
Sorry, much more than anyone wanted to know I'm sure.
Thanks for the prayers!
It's not at all more than I wanted to know! I asked, and you were kind enough to answer. These are things we all can relate to, too.
You neuro sounds marvelous. I wish that type would never retire!
That's amazing about the foot drop related to your back. I would probably never have put the two together, just assuming it that it was MS-related.
I'm hoping the next five weeks go smoothly. Keep us posted.
erash . You are so blessed to have a neuro who listens to your symptoms. As long as MRIs stay the same my dr seems to think everything stays the same. Regardless of progression. I see him Tuesday and if he doesn’t listen I’m gonna have to see about another dr I guess. Good luck to you.
Donnie
@doubled51
I hope he listens. Good luck!
Let us know how it went, Donnie.
I have a neuro appointment next week. Feeling well, but tired.
I hope it’s a great appointment!
I have appointment with my MS neuro on the 18th to discuss Rituxin and test for JCV virus.
You're in my prayers. I hope you let us know about what you decide about the Rituxin. There are many here who are using it or considering it.
Greaterexp, I just found out after lunch today that my next infusion of ocrevus is next Tuesday, April 10th.
I’ll be praying for a good experience!
I have a appointment this Friday to discuss my the MRI I had on spinal cord.
greaterexp• in reply to
I’m hoping you’ll come back and share how it went.
Made it to Oncologist for Cancer checkup and things are going well. Still concerned with swelling in left neck and inflammation🤷🏼♂️ Going to keep an eye 👁 on it and some blood work. Staying on feeding tube for now, wants me gain more weight. Still upright 😜👍🙏🐾😉Ken
I’ll keep praying. Thanks for keeping us posted. Bless you.
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