hola! Me animé a buscar una comunidad qu... - My MSAA Community

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hola! Me animé a buscar una comunidad que entienda y comprenda mis mismas inquietudes.

Heily- profile image
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Hello, I am 38 years old, since I was a teenager (13 years old) something was not right with my health, hemorrhages in the eyes, posterior to the vitreous, (they do not occur anymore) lesions in the feet and legs (annular granuloma) basically subcutaneous inflammations in the skin that have no explanation, (they are still there) numbness in the arms, legs, sometimes in the head, finally, everything got worse and I was diagnosed after the covid new lesions surfaced, and perhaps activated old ones that today, I recognize that I had, I began to notice a new symptom: in my legs, and it is that they did not respond when I wanted to run after my 6-year-old daughter, then I noticed that it was difficult to stand, I got too tired and I could not walk two laps around the park like I did before, if I entered a store I had to go sit down almost immediately, however I did not give up and continued trying, I walked in the park little by little, I feel that this helped me not to get sick. I was paralyzed. I was regaining mobility and strength, but then, Lhermitte's sign took me to the neurologist who through MRI diagnosed relapsing remitting multiple sclerosis. I started ocrevus. At the time of the infusion I feel tiredness and pain in my legs for several days, then it gets better, when the date of placing the new infusion approaches, I feel slow, tired and with a lot of pain in my wrists; cervical; back; and legs, even in the joints of the feet! Does anyone else notice that when you eat carbohydrates, the pain that comes at night while you sleep intensifies? The emotional part is difficult, I feel insecure, tired, I can't get a job where I can help my husband with the household expenses where I don't get too tired. My financial situation became so serious that I don't feel hope right now. I lost my car, my credit was ruined, sometimes I feel so useless and incapable, I want to be useful to my family again, I feel guilty that we are going through so many problems... my refuge is in God! I know that he has given me more life, perhaps than I was supposed to. And I fight to be stronger and braver. I am afraid of not being there for my daughter and not being able to give her everything she needs. When I overexert myself, I end up so sleepy and tired that I have to sleep for even 30 minutes to get back up again. I went from 170 pounds in the last three months to 185 pounds. I am no longer walking, I am exhausted. My appointment is next December 18 and the infusion in January 2025. I thank God for being in the United States, and being able to receive medical treatment, I am happy to read some comments from people who are 70 years old. Wow! Clearly they must be in a worse condition or severity, and perhaps they are going through this process alone. Thank you all. I will continue learning how to improve and stay strong for my family.

Hola, tengo 38 años, desde adolescente (13 años) algo no estaba bien con mi salud, hemorragias en los ojos, posterior al vítreo, ( ya no ocurren más) lesiones en los pies y piernas (gránuloma anular) básicamente inflamaciones subcutáneas en la piel que no tienen explicaciones, (aún están) adormecimiento en brazos, piernas, aveces en la cabeza, finalmente, empeoro todo y me diagnosticaron después que el covid afloró lesiones nuevas, y tal vez activó viejas que hoy día, reconozco tuve, comencé a notar un síntoma nuevo: en mis piernas, y es que no respondían cuando quise correr detrás de mi hija de 6 años, luego fui notando que costaba estar de pie, me cansaba demasiado y no podía caminar dos vueltas al parque como lo hacía antes, si entraba a una tienda me tenía que ir sentar casi de inmediato, sin embargo no me rendí y continué intentándolo, camine en el parque poco q poco , siento que eso me ayudó a no quedar paralizada. Fui recuperando la movilidad y fuerza, pero luego, El signo de Lhermitte me llevó al neurólogo quien por medio de mri diagnosticó múltiple esclerosis remitente recurrente. Comencé ocrevus. Al momento de la infusión siento cansancio y dolor en las piernas por varios días, luego mejora , cuando se acerca la fecha de colocar la nueva infusión, me siento lenta cansada y con muchos dolores en las muñecas; la cervical; espalda; y piernas, hasta en la articulación de los pies ! Alguien más nota que cuando come carbohidratos, se intensifica el dolor que viene por las noches mientras duerme? Es difícil la parte emocional me siento insegura, cansada, no logro conseguir un empleo donde pueda ayudar a mi esposo con los gastos del hogar en donde no me canse demasiado. Mi situación financiera se volvió tan grave que no siento esperanza ahora mismo. Perdí mi carro, se arruino mi crédito, a veces me siento tan inútil e incapaz quiero volver a ser útil para mi familia me siento culpable que de estemos pasando por tantos problemas… mi refugio está en Dios! Se que el me ha regalado más vida, tal vez de la que me tocaba. Y lucho por ser más fuerte y valiente. Siento miedo de no estar para mi hija y no poder darle todo lo que ella necesita. cuando me esfuerzo demás, termino con tanto sueño y cansancio, que tengo que dormir aunque sea por 30 minutos, para volver a levantarme de nuevo. Pase de 170 libras en los últimos tres meses ha 185 libras. Ya no estoy caminando, estoy agotada. Mi consulta es el próximo 18 de diciembre y la infusión en enero del 2025. agradezco a Dios por estar en Estados Unidos,y poder recibir tratamiento médico, me alegra leer algunos comentarios de personas que tienen 70 años Wao! claramente deben tener peor condición o gravedad, y tal vez estén pasando solos por este proceso. Gracias a todos. Seguiré aprendiendo cómo mejorar y mantenerme fuerte por mi familia.

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Heily-
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12 Replies
carolek572 profile image
carolek572CommunityAmbassador

Welcome, Heily- , to this forum! You are inspirational! You have a positive attitude and you’re doing so much to keep yourself as healthy as you can, in spite of what ‘ms’ does to you. We are our best advocates, after all. You can visit mymsaa.org for more ‘ms’ resources. I look forward to hearing more from you! Be well :-D

Heily- profile image
Heily- in reply tocarolek572

thank you ☺️

carolek572 profile image
carolek572CommunityAmbassador in reply toHeily-

You’re welcome, my friend! 🤗

Xvettech profile image
Xvettech

carolek572 said it best!

stepsforNeeC profile image
stepsforNeeC

Heily, you’re an awesome and amazing; God’s grace and favor I pray will give healing and comfort!! Your compassion and concern for your family even during health issues is a true reflection of your strength, and faith! Don’t be discouraged, even though this MS life can make “you wanna holler, and throw up your hands.” We will throw them up in continual prayer 🙏 as only our Savior can give us strength and peace like no other. If you haven’t done so, maybe consider looking into applying for Social Security Disability Benefits, to give you some financial cushion. We worked and it is there for you when illness makes working a challenge. I will be praying for you and also let your doctor know about health concerns with your current treatment plan. Sometimes we have to get on the right Disease Modifying Treatment in order to see the best results! Feliz Navidad and love ❤️ and blessings to you! NeeC

Heily- profile image
Heily- in reply tostepsforNeeC

Thank you! God is my strength! I am afraid to ask for any financial help, because I am not a resident yet, I only have a TPS status and a pending asylum application. I would have to get very good advice on that subject. Merry Christmas to you too and may God bless you.

stepsforNeeC profile image
stepsforNeeC in reply toHeily-

I understand! Continued prayers and blessings to you and yours my sister!! ❤️🙏

mrsmike9 profile image
mrsmike9

Age does not mean that others are worse than you. I am 65 and doing pretty well, all things considered. You sound like you're having such a hard time! I'm so sorry to hear that. We went through a period of bad financial hardship, as well. We adopted 3 children from overseas which literally bankrupted us. It was so embarrassing to go to court over that. We also lost a car. I found an old beater that someone was selling for $100. It wasn't great but it was something to drive and insurance was really cheap! It feels like being sucked into an abyss which doesn't help stress, which doesn't help MS. Keep plugging along. All you can do in those days is live moment to moment. I'm so fortunate and we no longer have to live paycheck to paycheck. Praying for you.

Heily- profile image
Heily- in reply tomrsmike9

Thank you, I have found a lot of peace in your answers, I have a lot of hope and my trust in God 🙏🏻 although it was not the best year, I am very grateful, because I have my parents alive with me, I have never lacked food and shelter, the mercy of God and his love accompany me, I have such a sweet daughter and a husband who loves me and strives every day 🙏🏻

NorasMom profile image
NorasMom

Your daughter is probably stronger than you realize. Of course we only want what's best for our kids, and running and playing with them is part of that, but you also need to accept that you are just Mama to her. She's still young enough to think that you're the most beautiful woman in the world and absolutely perfect. And she's right. You have a chronic health condition, but you're so much more than that. You've had these problems her whole life, so this is normal Mama to her.

I'm turning 60 in a couple weeks, and I've been dealing with this since at least puberty. My kids grew up knowing that I couldn't chase them around the yard but would happily sit and watch them play. They learned that there were times when I'd have to sit down suddenly and rest, even if it was inconvenient. Kids are resilient, and they adapt much easier than adults. All your daughter needs from you is love.

Heily- profile image
Heily- in reply toNorasMom

Your words help me a lot, they fill me with hope and strength! Learning to accept that I have to make adjustments is not an easy task, but I thank God immensely for being able to receive treatment on time.

Blanketttime1 profile image
Blanketttime1

i noticed when i did keto that my symptoms improved, however i couldn't sleep. as a lifelong struggler with insomnia (since i was 5!😱) i stopped keto pretty quickly.

it's hard feeling useless. while you might not be able to help financially, you are a mother and a wife and well, you! i bet they love you so much and aren't blaming you. it's nice to feel needed. perhaps think about time with your child and how they look at you, how they love you. hopefully this will remind you how much you are needed.

welcome. i would caution you not to compare yourself with others. for one thing, you don't know their situation. for another, it's a double edged sword. i remember a physio appointment where i watched people twice my age running on treadmills. i could barely do the recumbent treadmill at a veritable crawl. it hurt. however this place is fabulous and it's nice to know there are people who get it, whether it's how hard it is to feel guilty AND sick or just the twisted sense of humour many of us tend to develop.

🤗

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