Need advice

[Angelchef80]

I guess I have set my expectations to high for my dr. I have had 2 neuros so far that I have not been happy with, so I asked for a referral to MS center at Vanderbilt. They accepted me as a patient but first available appointment is not till January. Do I see another new neuro until then? Not getting any treatment right now, I found out I have MS in July.

[Jesmcd2 CommunityAmbassador]

Hi Angelchef80 ☺️ I honestly feel having a good neuro is a great thing.

What exactly are you looking for in one? What as wrong with the other ones?

As far as being on a DMT? The sooner the better☺️ it doesn't cure it. But slows it down.

Drs. Are Drs. Sometimes we get along with them, and sometimes we don't. But it's YOUR HEALTH and you need to be pro active about it!

My neuro and I have a love hate relationship. And it works.🤣😂 But that's me.

🤗💕

J🌠

[Angelchef80 in reply to Jesmcd2]

The first one I went to they were suppose to schedule an MRI, this was trying to find out what was going on. I waited 3 days and no one called to schedule it, so I called the dr office and they said the nurse hadn't sent in the orders for it. The second I started taking gilenya and was having dizziness. It took a day and a half for anyone to get back to me about what to do. I want a neuro that is going to be great with communication, have a staff that will call back in a timely manner even if it is just to tell me that I will have to schedule a follow up, not ignore me. Especially when I am taking a new med that if you experience dizziness you are suppose to contact your dr immediately.

[Midgey_Midge06 in reply to Angelchef80]

In my opinion - which is strictly my opinion i am not a health care anything - i wud stick w the neuro u have up until that January apt. That way if u need to, u still have the option to keep looking around if u dont feel comfortable at MS clinic. Just get copies of all ur medical records to take with u to the MS clinic

[Jesmcd2 CommunityAmbassador in reply to Angelchef80]

When they gave you the gilenya Angelchef80 did they go over the side effects with you at all? 🤔

I can understand your frustration. Not to mention that this is very confusing, and scary. And when you don't get answers from your Drs it makes it more so.

I'm not a Dr. And I don't take gilenya but you can check out here gilenya.com/c/multiple-scle...

For there side effects.

They also have an 800 number you can call for. Support.☺️ 1 800- gilenya.

Having MS is scary. We all know. Sometimes Drs. Forget that. And just don't move as fast as we want them to.

Hang in there! 🤗💕

J🌠

[SueAB]

I hear you! Healthcare today is not what it used to be or should be! I find that whether it is my PCP or a specialist, doctors today are in a hurry to see the next patient. I guess I can understand that since Medicare only pays pennies on the dollar billed. You definitely need help right now to get you started on navigating the MS journey. Is it possible to see this neurologist again and tell him exactly what you just wrote here? If you do not get any results, I would contact the MS Society and ask for recommendations in your area. We need to be our own best advocate.

[Jesmcd2 CommunityAmbassador in reply to SueAB]

Or MSAA.. 🤣🤣

[MrFixIt1959]

It's important to find a neurologist that you can build a relationship with. I tell anyone questioning their doctor to attend the Drug company events in their area as a way to evaluate possible neurologists. Everyone has different needs so there's a match out there for everyone. Attendance will also help you to get as much information as possible as you need to become your own advocate to manage the disease long term. (27+ years for me...) You need to be on a disease modifying therapy right now as a lesion in a critical location can be life altering. (I have two spinal cord lesions that bisect the spinal cord) When I was diagnosed there were no drugs and the course of the disease was very scary...

[Yooper]

Exercise, eat right and pray. This will all work out. MS is a challenge. Stay positive. God's Peace 🙏

[greaterexp]

I understand how frustrating it is to wait for things to get done. That, unfortunately, is pretty much the norm now. Having been a nurse in a clinic, I know how many steps we went through to get things done. I always tried to be like lightening in most circumstances, because I knew what it's like to be a patient. But I often had to wait on other people in the processes, even when I tried to be fast.

I would try to remember that MS is generally slow moving, and though you certainly want to get the ball rolling on a DMT, getting the one that suits you best is key. I think if it were me, I'd wait for the MS clinic appointment.

No matter what, we have to advocate for ourselves, since the ball can get dropped along the way. I wish you well with your experience at the clinic.

[lbenmaor]

It's so important to be comfortable with your Neuro. See if they have a cancelation list at the clinic.

Let me know how you do.

Leslie

[Angelchef80 in reply to lbenmaor]

I am on the cancellation list, I am hoping that will get me in sooner.

[lbenmaor]

I'm glad you're on the cancelation list.

[hairbrain4]

It's hard to find a good doctor. The first one I had actually diagnosed me. He was ok for a while then he started traveling & was too hard to get into see him. Then he ran for the AR legislature, wrote a book & went on book signing tours etc. So I found another one. I really like her but it is hard to get in to see her. She is usually about 3 months out so Jan isn't that long to have to wait for a good neuro. A lot of times that's how you can tell if they are good or not. If you can get in right away, generally they don't have that many patients. At least that's the way it is here in Arkansas.