Multiple Sclerosis

Nora

Age at interview: 59
Age at diagnosis: 48
Outline: Nora was diagnosed with MS after experiencing a tingling sensation in her feet and knees and numbness up to her hips. Nora has experienced other MS symptoms such as the MS hug, bladder control issues, and problems with her memory. Stress and heat can worsen Nora’s MS by triggering fatigue and “cog fog” in which it would take so much energy for her to think. Currently, Nora uses Rebif, an interferon beta 1A medication to help manage her MS. In eleven years, Nora has not seen any MS progression. Now, Nora focuses on eating healthy, resting, exercising, and practicing mindfulness.
Background: Nora is a single mother and a retiree who used to work in Human Resources. She enjoys volunteering, cooking, and staying active. Nora identifies as a heterosexual Hispanic or Latino female.

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Nora’s first symptoms were a tingling that began in her feet and traveled up to her knees and later persistent numbness up to her hips. Nora also experienced the MS hug where her muscles would tighten around her stomach. A doctor at an urgent care minimized her concerns, so Nora followed up with her primary care doctor. The doctor performed many tests and encouraged Nora to go to the emergency room. But, as a single mother solely responsible for her 8-year-old daughter, Nora could not go. Instead, she was referred for a a brain and thoracic MRI. Nora’s doctor explained that the MRI showed lesions and diagnosed Nora with Multiple sclerosis (MS).

Nora’s doctor prescribed Rebif, an injectable medication, which Nora has continued to take since her diagnosis in 2009. Nora learned to self-administer the injection at home from a nurse who works with the drug manufacturing company. Nora used MS Society videos to communicate her diagnosis with her parents. The support that Nora received from her sister and parents, as well as her co-workers has helped her to cope with her diagnosis. Nora has removed sugar and liquor from her diet to counter the impact of Rebif on her liver enzymes, and she started doing pelvic floor exercises to improve her bladder and bowel control. Even though Nora’s MS is stable, she began to experience memory issues. After the COVID-19 pandemic, Nora intends to receive a neuropsychological evaluation. Nora finds that stress and heat can impact the reoccurrence of MS symptoms such as tingling in her legs and seeing floaters in her eyes.

When she was diagnosed with MS, Nora’s main concern was taking care of her daughter and communicating her MS with her daughter. Through a peer-to-peer connection provided by a pharmaceutical company, Nora spoke to another mom who was diagnosed with MS and had a young child. The mom told Nora about the National MS Society’s resources including age-appropriate books and videos to help Nora explain MS to her daughter and have her be involved. Today, Nora’s daughter is a “little supporter for MS people” as she provides support and guidance to people her age who are diagnosed with MS. Nora’s work in Human Resources helped her understand her rights under the Americans Disability Act (ADA) and therefore, she felt comfortable sharing her MS status with her boss.

Nora continues to stay active and connects with a lot of MS events, does a puzzle from Brain HQ every day, and stays in touch with her close group of friends. When she was first diagnosed, Nora felt petrified because her MS was something that was totally out of her control. She learned to give up the control and now focuses on maintaining an even keel and not getting angry. Nora is happy with her decision to retire early but feels that her diagnosis forced her to put her dreams of finishing her Master’s, achieving a PhD, working for a consulting firm, and traveling for the organization on hold. Nora is focusing on one thing at a time and hopes to go back to school to earn her PhD.

 

Nora's symptoms are worsened by not getting enough sleep.

Nora's symptoms are worsened by not getting enough sleep.

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And so, throughout the day to remove the stress from work, I would take a walk. And then, I would come back. But within two or three hours, because of the yelling and screaming, I couldn't focus. So, I was noticing, also at home, that just the interference of the TV or the radio, it just-- at times, I would be up at night, just tossing and turning. I wouldn’t be able to go to sleep. And it was impacting my cognition. I just couldn't think right. And there were days when I would wake up, and I would be at work. But it's like, wow, I don't know how I got here. I mean, obviously, I know, but just the thinking was really hard. And I was just noticing that my muscles, they were just getting tight. 
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I know that, in terms of sleep, I need to have at least seven hours' sleep. Because if I don't, I will wake up the next morning, and I will be either fatigued, or I will sometimes have headaches that last the entire day. Where it's a very small headache, like here. But it's just the entire day, and it's very aggravating. 
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And so, I would feel my toes tingling, in the sense of the coldness, that they were so cold that they would be stiff. And so sometimes my fingertips, as well. So, I remember at work, one of the reasons why I would go out to walk, is to warm up. And it's not that the A/C was so cold in the office, it was because we were sitting. The only time that I wouldn't feel that, when I was doing conducting training in the morning or in the afternoon. But if I were sitting or doing virtual webinars or something, that's what I would feel in my hands and my toes. And then, also, if I don't get the sleep, I would just be tired with my thinking. I couldn't remember things. It was just fatigue and just tired, just being-- waking up, and I'm still tired and sleepy. And then the bladder. 

 

 

Nora decided not to take medication for her bladder

Nora decided not to take medication for her bladder

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So, my thinking is, yes, it will help me in not having the frequency of going to the bathroom, but then with a dry mouth, I’m going to have bad breath. And then constipation, I am going to have to do something for the constipation. So, the way I looked at it, is if I want a medicine that will help me with my symptoms, but not cause other side effects that I need to be taking other medicines. So that's, kind of, why I stayed away from the bladder.  

 

Nora shares how physical therapy helped her with bladder control.

Nora shares how physical therapy helped her with bladder control.

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So, I went to a physical therapist who specializes in pelvic floor exercises. And she was awesome. She was really good, and she gave me a lot of exercises to do.  
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And so now three times during the day, I would set my alarm to do the Kegel exercises. And then I would see her. I think I saw her three times a week. And I think after 12 weeks, I was more in control.  Well, at least, let me put it this way. When I had the urgency, she tells me to do the Kegel, and then walk to the bathroom. And it helped. Because I was so scared that I'd have to wear diapers for the rest of my life. So, she told me to do those exercises.  And she also told me, “Obviously, watch your intake. If you're doing caffeine, if you're doing fruit juices, certain things will just aggravate your bladder.” And sure enough. So, I still like coffee, so I knew that if I drank coffee, the next half hour to 45 minutes, I need to be close to bathroom. Because the urgency would come, and so that was awesome.   

 

 

Nora describes the process of administering a pre-filled syringe.

Nora describes the process of administering a pre-filled syringe.

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I would take the pre-filled syringe and put it into an auto injector. So, I would have to secure-- there was that lock. So, I would unsecure the lock, and then I would put the pre-filled syringe in the auto injector and then twist it. And the button that you press is hard, because obviously it has to go.  And so, I did that one, probably for about five or six years. And when I went to an event, they now had a pen. So, the pre-filled syringe is inside the pen, and all you had to do is just press that one button. And I said, OK. Because every time I look at the syringe, I see the needle. And it's like, oh. And so, I said, OK, let me try that. Because that way, I don't have to touch the syringe. I don't have to put it in the injector.  So that's called a Rebidose© pen. So, I started doing it. But then, I was noticing that I would press-- when I put the pen, it was a lot of more pressure in the skin. And there was a louder pop, definitely a louder pop. After I do the injection, I have to rub the area, too. Because as soon as I inject, you can feel the liquid, just right there.  So, I have to massage it, so that I'm, kind of, spreading the medicine around, for about five minutes. And then I always put some lotion, because I don't want the skin to get scarred or any changes. With a Rebidose© pen, I was noticing that it was much deeper. And yeah, I noticed a couple of times where there was a black and blue mark, but I did it with the other one. So, I did the Rebidose© pen. 

 

Nora decided to leave her neurologist after they didn’t share information with her.

Nora decided to leave her neurologist after they didn’t share information with her.

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And I saw my second neurologist. When I saw him give a presentation, he was very knowledgeable, very forthright. I'm going, wow. And my nurse and these other ladies recommended him. So, I left the first neurologist, because one, she didn't show me anything about that MRI, which is the diagnostic tool. And she just wasn't encouraging. And she didn't have a lot of information on MS. Because when I would ask her some questions, she would just say, “Oh, go to the website, or do this, do that.” So, I really wasn't happy with her.  

 

Nora is comfortable with her neurologist because of their MS knowledge

Nora is comfortable with her neurologist because of their MS knowledge

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So, then I said, OK, with this new neurologist, he's very, very comforting, but also very knowledgeable. And he did a lot of research. He did, also, talks. And he would stay. He was very current with all the new medicines. So, I figured, OK, I've now found a specialist that I really feel comfortable with. And when I would go into his office, he had all MS information. And so, I figured, OK, I'm in the right place now.  

 

Nora compares visit experiences with different neurologists.

Nora compares visit experiences with different neurologists.

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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. 

 

 

Nora makes plans for taking injectable medication while traveling internationally.

Nora makes plans for taking injectable medication while traveling internationally.

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And so, the summer came. And like I said, we normally travel. And I was, kind of, like, a little concerned. But I said OK. So normally when we travel for the summer, I would go away for a month. So, I was able to get a two-month supply, because I needed to get the month that I was leaving and then the month that I'm coming back. So, I got the two month's supply. And I felt so weird, traveling with almost 12 syringes. But I had the prescription. I had the information of the doctor. And then the company that provides us with the medicine had a little pouch, a travel pouch with ice. And I said, OK. So, I figured, OK, so let's see. Hopefully, they won't stop me. But no, I had it in the carry on. They just asked what it was. I told them. And I said, OK, this is great. And this is before TSA was there. So, I figured, OK, this is good. And then here, I was able to do my normal injections. I figured, OK, great. So, I can travel, going through the airplane, and the airport. And then when we would come here, we wouldn't stay in the town. We would literally get on buses or taxis or whatever. Or we would rent a bus, and we would travel from place to place.  

 

Noise interfered with Nora’s concentration.

Noise interfered with Nora’s concentration.

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At work, we had cubicles. So, there's no door. And unfortunately, my coworker has a really loud voice. And they would talk from one end of the office to the other. And I kept telling them, because I told them I have MS, it interferes with me being able to concentrate on work. If there's loud noises, I just can't focus. And so, I kept telling her that, and she wasn't very sensitive. She just said, “Well, that's who I am, and I talk loud.” So, I was noticing the stress was-- I was starting to get more fatigue.  I was starting to, like, just not have patience. And I couldn't hear. I mean, I could hear everything, and it just interfered, where I couldn't think. And there were moments at work where I had what we call cog fog, where it didn't hurt to think, but it took so much energy, that I just didn't want to bother thinking. It was horrible to say that, but-- and so, throughout the day to remove the stress for work, I would take a walk. And then, I would come back. But within two or three hours, because of the yelling and screaming, I couldn't focus 

 

Nora prefers socializing with other people with MS.

Nora prefers socializing with other people with MS.

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And in terms of social, it's kind of funny that now I just gravitate to individuals who have MS, who can understand if I feel fatigued or if I can't remember things.  I have some friends at work, who I did tell. And they, sort of, understand, but there's times when I would say, “I'm sorry, I can't go out, or I can't do this.” And they would say, “But you never want to go out!” And so now, in terms of socializing, I prefer only socializing with other individuals who have multiple sclerosis, who can understand when I say, "I'm sorry, I can't go."  
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I remember one of my MS friends invited me for luncheon for one of those clubs, the Rotary Club. And I woke up, and I just wasn't feeling well. I was just, oh my god, I want to go to this. But I can't. I mean, I just-- I was so tired. And so, I sent her a text, and I said, “I'm sorry. I'm not feeling well.” And she goes, “OK, no, I understand.” And so immediately, I said, see, she understood. But if I would have told someone else, they would say, why don't you just tell me the truth? You don't want to go, or you don't want to do a fundraiser, you want to do--  So, for me now, I'm gravitating more-- obviously, family and then long-term friends. But otherwise, new people-- I'm, kind of, just limiting to them who also have MS, who can understand if something comes up, that I'm doing it because of my illness, that I can't be there. It's not because that's another excuse. 

 

 

Nora emphasizes the importance of just being there for someone. 

Nora emphasizes the importance of just being there for someone. 

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First of all, just to be there for the person and to listen. I know that we all have a tendency, well, let me do things for you, let's-- so to listen to the person, and for the MS person to truly be honest and tell the family and the friends if they do need help or what they need help with. And to understand that, sometimes, we can't even explain what it is, the symptoms that we're feeling.  We just know that, I can't think, or I'm tired, I'm fatigued. And it's not associated with anything more than, that's just what I'm feeling at the moment. And so, to be sensitive and to listen, to be sensitive. And if the person asks for your help, then to please offer it. But otherwise, just be there. 

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