Hello Everyone, Your Feedback is Welcome! - My MSAA Community

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Hello Everyone, Your Feedback is Welcome!

stepsforNeeC profile image
28 Replies

I had an appointment yesterday with who I thought was going to be my new Neurologist! I'm not dissatisfied with my previous Neuro; even though he did move his practice and communication could have been better, he's a good caring doctor, just annoyed with some little things. I thought it might make sense to streamline all my doc to my current hospital. After the Kidney Stone Lipotripsy near death experience Jefferson 's team has been "spot on" with my care and follow up treatment. Unfortunately, I guess just like with our Phillies, can't always win! This Neurologist just didn't make me feel comfortable. Horrible bed side manner and immediately started the "ball rolling" for Aubagio DMT! I take Copaxone because for me with other health issues it's the best option. After very careful thought and pray 🙏 I decided to stick and stay with my current Neuro. At least he values me as a patient, "Reads Critical" updates in my chart and doesn't make me feel alienated! Oh the journey we sometimes travel right! Well to chat - off on a positive note 🎶🎵 Happy Mother's Day in Advance. Enjoy whatever you do 🌷💐🍄🌷💐🌻Blessings and Peace NeeC

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stepsforNeeC
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28 Replies
falalalala profile image
falalalala

I would've done the same. :)

Xvettech profile image
Xvettech

happy Mother’s Day tp you too! Phillies - that’s my team too! You’re from my neck of the woods! I’ve gone though 3 neurologists and finally found my 4th. It is important that you should like them. They are dealing with your life after all! I hope you get everything situated so you are comfortable!

stepsforNeeC profile image
stepsforNeeC in reply toXvettech

Thanks you - enjoy your weekend 🙂

Cwright170994 profile image
Cwright170994

Good UK morning to you! I'm happy you have a neurologist now that suits you well, and I hope they don't leave you in the dark about your health ❤️ my neurologist, and more specifically my MS nurses, keep me updated with stuff. My last appointment with the neuro, his first point was that, after being on ocrevus for 2 years, I don't have any new lesions! I danced a little after he said that, more so because my brain looks like a Jackson Pollock painting, and I'm sure yours might be the same too, lol 😅 I started on copaxone, but we found it wasn't stopping my lesions from developing, because my RRMS is aggressive, as my MS nurse put it, when she called to tell me to stop the copaxone on such date. That was back in 2021. I was in hospital, hooked up on IV steroids, after I had 3 generalised seizures one night back in April that year. Steroids are brilliant, mind, but my new dmt is allowing me to walk again even without steroids, even if it's with my stick! 🤣

stepsforNeeC profile image
stepsforNeeC in reply toCwright170994

Great news, always good news when our DMT's are doing what they are supposed to do. Yes, will keep you updated.!

Blessings

NeeC

Cwright170994 profile image
Cwright170994 in reply tostepsforNeeC

Thank you 🤗🫂❤️ x

Robsmom profile image
Robsmom

HelloI lived in Philly when I was diagnosed in 2009. I got the diagnosis at Wills Eye and patients there told me, "do not go to Jefferson." I went to Penn but I hear now that Hahnaman(may be called Drexel now) has a really good MS center.

stepsforNeeC profile image
stepsforNeeC in reply toRobsmom

Hello, Nope Hahnemann itself is an empty shell of a building, has been that way for at least 5 years. There is a Drexel Med but I think it's afiliated with UPenn. I'm gonna stay wth my old Neuro for now, he knows my history and overall was a good Neuro. We'll deal with the drive.

Blessings

NeeC

Robsmom profile image
Robsmom in reply tostepsforNeeC

Yeah, when you find someone you like, stay with them.

RoyceNewton profile image
RoyceNewton

stick with the euro you are most comfortable with.

stepsforNeeC profile image
stepsforNeeC in reply toRoyceNewton

Exactly 💯

FearlessMsMimi profile image
FearlessMsMimi

I get your explanation and I too experienced a situation like this when I moved from PA to FL. I always say, I have to be comfortable with my doctors in knowing they understand me and value my decisions. Keep up being your best advocate and Happy Mother’s Day.

stepsforNeeC profile image
stepsforNeeC in reply toFearlessMsMimi

Thank you and Happy Mother's Day to you!

joshremus profile image
joshremus

My daughter has a complicated condition (Functional Neurological Disorder) and after being disappointed with Penn several times, Jefferson finally worked for her.

She found a neuro she really likes (specializing in movement disorders).

I have a MS expert @ University of Michigan and local neuro that makes sure all the orders and things are processed with the local health system. But she's a rockstar, so she only sees patients every other Monday morning!

You should go wherever you feel most comfortable, but I would think there would be several neurologists to choose @ Jefferson or wherever you might go!

stepsforNeeC profile image
stepsforNeeC in reply tojoshremus

Thanks so much. Jefferson does have amazing doc's, just think this one is not the "right" one. I decided to stay with current doctor, a little far after recent move; but 14 years is history.

Blessings and Peace

mdarc91103 profile image
mdarc91103

Hi NeeC I grew up in northeast Philly but I'm in Bensalem now, right outside of Philly! I think you made a great decision. I love my neurologist and he recommends not changing DMTs if your current one is working. I'm on Aubagio and I'm very happy with it because it's been working for 5 years. It was rude and very inconsiderate of him to decide to change your meds without even asking you!

Go Phillies and Eagles!

stepsforNeeC profile image
stepsforNeeC in reply tomdarc91103

Yes, that's how I felt and uncomfortable.

KipAngCan profile image
KipAngCan

Hi!! I’m from near Philly too and those Phillies certainly keep you on the edge of your seat!! If you are happy with your current neurologist I’d say STAY. I saw 3 different docs before I found the right one. One was affiliated with Penn and he was a disaster but the one that diagnosed me was Penn educated and he’s great!! Best wishes with whatever you do, you have to feel comfortable.

stepsforNeeC profile image
stepsforNeeC in reply toKipAngCan

Thank you, exactly! :)

kdali profile image
kdali

I went back for a second visit with one just to make sure I was not crazy. You're smarter to nope right out the first time!

Sandydemop profile image
Sandydemop

you are the team leader and you get to decide who is on your team

stepsforNeeC profile image
stepsforNeeC in reply toSandydemop

Thank you, that's how I feel!

itasara profile image
itasara

I was diagnosed in 2005. Started Copaxone ithe Next year and on it for 12 years . I probably had MS long before my diagnosis but had no specific symptoms. My daughter had the same diagnosis three years before mine and there was enough history after my first major symptom in 2005 to diagnose me with MS plus the lesions on MRI of spine and brain all inactive. There were only four medications for MS at the time. 18 years later I am off MS drugs. Have a very mild situation with MS and other than some aging symptoms which I think are primary issues; I am doing well. Same with my daughter is much younger than I and her doctor told her to come off medication’s in her 30s. I had a general neurologist for nine years and then switch to an MS specialist I am much more happy with his stayed with her for the past four years. She is more communicative with me and I only see her once a year so far.

stepsforNeeC profile image
stepsforNeeC in reply toitasara

Thank you itasara

BlanketTime1 profile image
BlanketTime1

i'm glad youd already found a good neuro. they're like gold dust.

stepsforNeeC profile image
stepsforNeeC in reply toBlanketTime1

Yes indeed 😊🙏

Manos profile image
Manos

Hi StepsforNeeC

I have a similar problem. My new neuro proposed change from Copaxon to Ocrevus. I asked to have a recent MRI (brain, neck, thorax). No new lessons the last 8 years. Clinical condition not very different from before (a bit decreased mobility). So I am thinking not to change medication, since Copaxon is of very low risk medication.

But if your clinincal condition is worse and you have new lessions in MRIs I would recommend to think about changing to a more effective medication.

stepsforNeeC profile image
stepsforNeeC in reply toManos

Thank you, I decided to stay on Copax! No change in more than eight years; my old Neuro said we can't say we won't ever have a mild flare especially in summer or other factors. Just as long as they aren't continuously "things are not going well." I think with other health issues I bouncing back from, I'll stick and stay 😊lol Thanks again. NeeC

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