Visit Experiences

I think I would-- during my best times, I would try to ask questions about prognosis. In my more stressful times, I mostly just was like-- you know how you can sort of passively make your way through a doctor's appointment where you just answer the questions, they tell you what they're going to tell you, and that's the end? I feel like I more defaulted to that as opposed to the more proactive of, I have a list of things I need you to tell me before I leave this room. But I think I would sometimes be like, what should I expect, what should I be worried about, what should I be looking for, trying to figure out what was a concerning symptom that meant something was very wrong versus, like I said, just being a human in a body. Things don't always work well. That's sort of inherent to being in a meat sack. But how to know whether my numb foot is because I sat weird or, oh, no, my immune system is attacking my brain was a difficult thing to get my mind around and get comfortable with.

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Now, I have a lot of faith in my medical team. And I feel like I have an understanding of what sort of things I should be reporting to them if they come up.

Well, he didn’t understand-- What the guy immediately wanted to do was start infusions. And I was starting off by telling the guy, I don't like needles. I don't like needles. I don't like, you know, so he started off with that. Then I had neuropathy, and he had to perform tests on me, which had needles. And he was scared to perform the tests on me because I had said that I don't like needles. Well, this wasn't exactly the same thing. They were, it was a pin prick. It was a metal thing. It just went in your skin. It was not inserting needles into veins, I guess. That's the part he didn't understand that I didn't like. So while he was doing the testing on me-- he was afraid to do the testing, because I had said I was-- and, so right there, I was like, yeah, I'm not comfortable anymore. Because he was uncomfortable. It's like, I need you, as the doctor, to be in charge of the situation, not me to be going, yeah, this guy is scared.

When I went into her office, it was a small, little office. No MS information, nothing. And she was a little, my word, ditsy. So, I just didn't have a good connection with her, in terms of doctor-patient. And I said, "No, I need to learn." 
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I saw my nurse in another event. And again, I was complaining about neurologists. And then she said, “Go to Dr. So-and-so.” And oh my god, that was another godsend. Because I brought my previous CDs. And I spent almost two hours with him. He looked at my previous CDs. And then, I love his office. Because there's a first floor with the MRI machine, so we would do the MRI at, I'd say, 10 o'clock. And then at 11 o'clock, we'd go to the second floor, and he was there. And so immediately, we would be able to do it all in one day, which was awesome.  
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It was almost a year later of me being diagnosed, so I had a whole bunch of questions. And he was awesome. And he says, “Any questions, call me.” And through there, I met some other MS friends, patients and we were all kind of like his clique. We followed him and go to all his talks and stuff, so I felt better. 

The neurologist that I have right now is the guy-- the man that diagnosed me. I've had him all this time. He left and went to [LOCATION] for a little while and came back, so I had a different neurologist and then I got him back again. So I've had him since day one and he's very, very supportive. You know it was always my decision. And he always ask me every single time, "Are you OK with this decision?" And I'm like yes. And I think the two of us together decided what is the purpose-- what would be the purpose of long-term injectables that could cause you know some side effects and what benefit would they of me? I felt comfortable with my decision. I could have always changed at any time and I still could if I wanted to. He was always very good about telling me up and coming things and what new treatments were out there and what I, you know, could take part in, and I was always willing to learn and do it. So all in all, I'm comfortable, because I feel at the very beginning, he told me I don't think that you will ever be totally disabled. And am I somewhat disabled? Maybe so. I mean, yeah, but I'm also older. So, you know, is some of that just because I'm older or is it just-- just my MS? But I'm comfortable with the decision that I made. I think it was the right decision. I think he helped guide me through that decision, so he was very helpful.   

I think that my neurologists have been very receptive to the fact that, you know, as I mentioned before, I'm very in tune with my body. If I don't want something, I won't do it. And I think compliance is a big key to positive outcomes. And so, they are more-- they were more apt to listen to me wholeheartedly before making any suggestions if they made suggestions. But if I would ask them, you know I would more than likely follow suit with what they said and what they asked me to do. So, I think just knowing that my level of intellect, they were appreciative of the fact that you know I'm not going to make a decision that's going to negatively impact my-- my abilities.   

INTERVIEWER: Got it. So it sounds like they trusted you to make some of these decisions.   

Make the right decisions.   

I have a great relationship with my neurologist from—I’m very proactive, as I mentioned. And my desire is always to not just be a number on their calendar. So, I really make it a point to get to know my doctors personally, as much as you can, you know, at an every-six-month visit. But my current neurologist also has four teenagers, so we lot of times talk more about our families than we do about my health issues. And I know he knows who I am when I come in. I’m not just a number. He always asks me about my kids and things, and so he listens to me. And when I came to him and said that some things were changing with the drug that I was on, regarding my insurance and the coverage and the idea that it was going from brand name to generic, that there was going to be some issues. I had already researched what I felt was going to be my next fit for my next drug. And ahead of my meeting, we have an online portal. I was able to say, “hey, listen, this is what’s happening with this medication that I’m aware of. This is what’s happening with my insurance. These are the drugs I’ve researched. I know this one isn’t good because I’ve had breast cancer. I know this one was good in the past.” And when I went to my appointment, he said, “you know, I’ve researched, and everything you said looked good. And we were able to get started on the new medication immediately. 

I like them because I mean, I don't know what's happening up there other than what I feel. But I do get paranoid sometimes that more damage may be happening, and I don't know. And I really like getting that MRI and getting that call from them saying everything's stable, and there is no swelling, or there's no any of those other things I don't Google anymore. But yeah, it's very comforting.

He always wanted me to get MRIs. I hate getting MRIs. I’m claustrophobic. And the MRIs seemed to be the same, but my condition, my abilities or what you want to call them, my, what I am able to do, got worse, even though the MRI stayed the same. So, I was like, I don’t really care what the MRI shows. I care about what I can do or what I can’t do.

And one thing that they started doing, and I've always thought that it should be done with any multiple sclerosis patient, is they started taking measurements of my physical capabilities, establishing a baseline. I would have thought that that should have been standard for anyone with a progressive neurological condition so you could watch someone's deterioration over time. But that was really helpful.

We monitor MS through three primary modalities at this time.

What symptoms are patients reporting?

There are things that patients experience that we can't see, so we listen very carefully and patient says, you know, I'm weaker in this leg.

You may not see that in your physical exam, but I am weaker in that leg. Or my hand is not as coordinated as it used to be, or sometimes I'm having double vision, or towards the end of the day I'm having many more symptoms.

So we monitor MS by what our patients are telling us. And when we see our patients, we perform objective neurological exams.

We go through the entire nervous system and sometimes our exams are not complete, but they're focused depending on what our patients tell us.

And along the way, we try to take quantitative measurements. How long does it take our patient to walk 25 feet and while they're walking, are they showing good coordination and symmetry?

We look at grip strength and we have machines to test grip strength. So I know that a person produced such and such grip force or pinch force two years ago, and what are they doing now?

And they're great machines hat can give us the measurements for this. We measure vision, either visual acuity or the ability to differentiate objects of different contrast.

And sometimes we have our ophthalmology colleagues do ocular coherence tomography tests.

And these tests measure the thickness of the retina because the retinal thickness does change.

As MS moves forward. We also do neuropsychological tests to determine how well a person's memory and general thinking is performing.

So there's symptom reporting by the patient.

Our neurological exam, which includes some of these, these objective measurements I just mentioned, but also MRIA patient may not have symptoms and we may not see changes on the physical exam, but the MRI might show new lesions.

There are a lot of places in the brain that can have brand new MS lesions, but the patient doesn't know it. So-called silent active lesions. So those are the three basic methods that we monitor our patient.