In need of advice please....: I need some... - My MSAA Community

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In need of advice please....

Juleigh21 profile image
16 Replies

I need some guidance. I’ve been seeing my neurologist for 3 years. He’s 64 and brilliant. He is a paid speaker at many doctor conferences and colleges. It is a hardship for him talking in layman terms. I always take a family member with me to my appointments and we all struggle to understand what he says. He wants me to consider changing from Tysabri to Mavenclad. I’m very uncomfortable with this. Mavenclad is so new to the US and has a lot of safety precautions that scare me. I’ve been to see 2 more neurologist for second and now third opinions. I really clicked with the third doc. He’s 42. He spent an hour with me and felt that Ocrevus would be a good fit for me. He was surprised my doc wanted to try Mavenclad already. I don’t want to be my docs first patient/guinea pig on this med. To change docs AND meds is a huge change but my MS is progressing (EDSS score is going up and cognition is going down) and I’m not tolerating the Tysabri well anymore. Am I rushing into such a big change or would I be foolish to not change??

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Juleigh21
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16 Replies
greaterexp profile image
greaterexp

In my humble opinion, switching sounds like a great idea. You seem to understand this newer doctor better, seem to be able to build rapport with him, and he probably has many more years of practicing yet to come. It is so important to find a doctor who knows their stuff, but also one with whom we can relate. If other factors, like insurance, fall into place, I'd be giving this fellow a look.

Let us know what you decide.

carolek572 profile image
carolek572CommunityAmbassador

If you are uncomfortable with your doctor, unable to fully comprehend what he says, then I would seriously think of going to another doctor. My only concern would be to check if this new doctor is in your insurance network. I always say that communication is key. Let us know what you decide, and best of success, Juleigh21 :-D

Fancy1959 profile image
Fancy1959

Juleigh21, its Fancy. The best thing you could have ever done was to get different opinions when your radar or self protecting mechanism is going off. Too many people are afraid to trust their instincts but I say to you you are the best advocate for your own health! If something bothers you or worries you and you can't get any definitive answers you need to check around.

Brilliance is only as effective as is the speaker who can bring it down to a laymsans level so that you understand what he is talking about. You can be brilliant but without common sense I often find that brillant people aren't very smart at all on a basic ground or Earthly level. What good is having all that knowledge compiled if you cannot reach out and make the average patient understand exactly what you're referring to or trying to explain. Find a doctor who can put it on your level. If you have misgivings about being switched to mavenclade, you did exactly the right thing looking for other answers with other neurologist.

In my opinion you are not switching doctors too soon but perhaps a bit too late because your disability scores are increasing. Once the disability is established and the connections are broken it is often hard to get your disability corrected to the same level as it was before the set back struck. If you like the third neurologist by all means switch. I like the idea of you going on ocrevus because a lot of good is coming from the patients who are on it. I have been on it myself for one and a half years now and I'm starting to see some significant improvements ever so slowly but surely. My last infusion was the beginning of June and since then I have noticed my spasticity has pretty much gone to almost zero on days when I'm not exhausted or having an overall horrible day. The new and most exciting thing that has happened for the past week is my bladder incontinence is changing little by little. The frequent and sudden urges that are uncontrollable have gone down significantly. I've noticed my bladder is holding much more before I have to empty it. It's acting more and more like a normal bladder and I hope like anything this continues.

Juleigh, I hope this helped and I hope and wish you the best of luck in your quest. Once again trust your own instincts because you are you're the best advocate for your own health! Take care until we speak again and remember together we are stronger! Fancy.

IFwczs profile image
IFwczs

Fancy said it well. My neuro says Ocrevus is the only MS DMT to slow down disability progression.

Iona60 profile image
Iona60

The fact that he is 64 jumped out at me. He won't be asking your permission when he is ready to retire in a few years. Having a neuro that you can communicate well with is imperative in my book. The fact that he is recommending Ocrevus is a bonus. If it were me, I wouldn't hesitate to switch. Best of luck.

bxrmom profile image
bxrmom

I agree with everyone else, time to switch neuro's and therapy. Sounds like you met one you clicked with. If your insurance covers them, go for it! Keep us updated.

Jessie

Peruzzot profile image
Peruzzot

I'm with everyone else on this one. If you feel comfortable with the 3rd neurologist and he can explain everything to you in a way you can understand, make the switch. People who can't explain their topic using words their audience can understand either don't really understand it themselves or only want to show off their fancy shmancy vocabulary. Or as one of my coworkers put..."baffle you with bullpatties".

All7 profile image
All7

YOU have to feel comfortable with your neurologist. He may be brilliant, but sometimes the medical jargon doesn’t work when you want down to earth, understandable advice. You’re the patient, you know your body and it’s your decision to treat this disease with whatever you feel you should. Don’t let any dr talk you into a treatment you don’t feel is right for you. If you clicked with the third one, go with your gut. Sometimes a new perspective is a good thing.

Best of luck! No doubt you’ll make the right decision.

pamgarner profile image
pamgarner

sometimes I have to wonder if our dr's are persuaded my drug manufacturers with some kind of incentive for using the newest drug of the day.By all means I would find another dr. I know it is a headache and hassle, but think about how many brain cells you will save by not worrying about him.good luck

hairbrain4 profile image
hairbrain4 in reply to pamgarner

Some doctors do get a few fringe benefits if they use that company's drugs. I used to work for a doctor & the reps treat the staff & the doctors well.

FearlessMsMimi profile image
FearlessMsMimi

Juleigh21 remember you are the final decision maker when it comes to your treatments. Switching doctors is always a tough decision and if you feel comfortable with the current one why not express what you feel to him and why. If he really has your best interest at heart he will agree with you and go with your wishes.

mrsmike9 profile image
mrsmike9

Follow your gut instinct, which sounds like "change". I would be nervous of a brand new med as well.

falalalala profile image
falalalala

I think that the third doctor sounds the most intelligent. ;)

hairbrain4 profile image
hairbrain4

I agree with everyone else. you were smart to get another opinion on that drug. Changing to a doctor you feel comfortable with is a big plus, Its bad enough that we have to go & to have one you can't understand is even worse. communication between the patient & the doctor is the most important part of seeing one. I started Ocrevus last October //7 have already seen a lot of improvement to the point I almost forget I have MS. The fatigue is gone along with the cramping in my legs at night All with no side effects. Its a good drug with a lot of good benefits coming from it.

mbrooks20 profile image
mbrooks20

In my opinion you have to go with what is more comfortable to you. I would switch to the newer doctor because it seems that you get along with him better. I told my husband once a doctor starts ignoring what you want or how you feel they are not a doctor for you. If a doctor is not willing to adjust to what you need or understand then he may not be for you.

Mssailor profile image
Mssailor

if you clicked with this new Dr, go for it. You went for other opinions because you were not comfortable, so go where you are comfortable.

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