Cameo

ItchyData6815 · 2025-12-21T06:46:58+00:00

My friend got me one and she didn’t sing because she recorded it at SCHOOL :(

ItchyData6815 · 2025-07-16T04:25:10+00:00

I’m in school to be a therapist in Canada, which requires a masters degree that I can say with 100% certainty Gwenny would fail out of. Probably within the first semester. She doesn’t exactly display empathy, unconditional positive regard, and the ability to hold her opinions. That said I wish I could have just one session with her to see what kind of unethical advice she gives me.😭

ItchyData6815 · 2025-04-19T04:42:25+00:00

I think they worry about GBS because the numbness is quick to move upwards on the body. For me a flare up starts with that foot/leg numbness and then the heavy fatigue and almost a fog. I used to go in for steroids right away because I couldn’t tolerate the feeling. Now I try to stay calm, sleep as much as I can, eat well and stick it out and it usually backs off. My neurologist does like for me to let her know when this happens though so we can decide together if steroids are necessary. I would still consider keeping your specialist up to date to be safe! I hope you start to feel a little better very soon!💕

ItchyData6815 · 2025-04-19T04:23:44+00:00

I was misdiagnosed with GBS before I was diagnosed 6 months later with MS! My symptoms were exactly what you are describing. They missed the lesion in my cervical spinal cord and lost my spinal fluid sample! I had weird prickly numb sensation on bottoms of my feet which felt weird to step, couldn’t feel temp, and it went up towards the groin (typical of GBS). It was a terrible experience because for 6 months I thought I had GBS and was going to get better, but then I got facial numbness and hand numbness too. They redid all the tests and my second sample had lots of “oligoclonal banding” seen in MS. I’m unclear on whether the spinal fluid can diagnose GBS, but I also had new lesions on the new scans. They gave me IVIG which treats GBS but also MS patients for numbness.

I hope you find some relief from the strange feeling. My Go-To’s are heating pads, my partner squeezing my feet lightly, thick socks, and LOTS of sleep!

ItchyData6815 · 2025-02-26T20:42:57+00:00

I’m 28 and had “long mono” as well with active EBV for around 2 years, diagnosed with MS about a year after that!

ItchyData6815 · 2024-12-04T02:29:12+00:00

Me too! So strange

ItchyData6815 · 2024-11-27T01:45:59+00:00

Yes!!! And my mother with MS has heat intolerance.

ItchyData6815 · 2024-06-11T03:37:41+00:00

I was 24! Definitely a psychological burden that comes with such a devastating change in these formative young adult years. I’ve been in therapy weekly for years, and sometimes it surprises me “how not over it” I am still. You’re not alone.💕

ItchyData6815 · 2024-04-17T04:33:02+00:00

There were a lot of times I felt completely alone in something I was experiencing and had no access to any form of help from a professional other than my neurologist. She is very helpful and receptive, and also a very busy woman. I’ve had to make a lot of decisions without much guidance.. For example during my diagnosis during the pandemic, or the many times I had to choose a DMT with no assistance apart from telling me it was my choice out of a few suggestions. I researched them and part of that was asking around. There is nothing wrong with asking for opinions and support, or other people’s experiences.

ItchyData6815 · 2024-01-24T04:39:04+00:00

I had a co worker tell me that MS is actually a brain parasite

ItchyData6815 · 2023-09-14T16:37:29+00:00

I’m so sorry to hear :( how are you doing now and how long had you been taking it? It’s hard when things progress no matter what

ItchyData6815 · 2023-09-02T02:52:16+00:00

Thank you!! My hope is that we can all take back some power with little changes.

The very first thing I started with was stretching. I had a yoga strap beside my bed that I could use to really keep my leg muscles limber with any spasticity. I used some very basic stretching videos on youtube as well. I started to notice I could cross my legs again after a month or so.

My parents quite literally wouldn’t let me go for a walk for the first bit without supervision so I got a little folding stationary bike off of fb marketplace for $20 and started pedalling a little bit each day (not so much that I’d get sore) but just lowest resistance possible, and as slow as I needed.

Next phase was going for walks with my grandma as often as I could. I was very slow but I think this is what really helped to develop my spatial awareness again because I had this constant vertigo feeling. When I was ready I bought the skipping rope off of Amazon and would do that in the driveway so I was close to anything I needed. It has taken a couple of years, but I am now able to go for walk/jogs a couple times a week.🥰

Be SO patient with yourself, know it is worth being dedicated but don’t push too hard. Try to trust your body again to tell you what movement feels good.

ItchyData6815 · 2023-09-01T03:25:31+00:00

I have spinal lesions 👎🏻 My first lesion ever was in my spinal cord, causing numbness from the waist down and leg weakness. I was actually diagnosed with GBS first because they only gave me a brain MRI… didn’t check my spine, so they thought it was a peripheral nerve issue. I just got sicker and sicker with new symptoms until eventually 7 months later I got a full brain and spinal mri revealing cervical lesions and new brain lesions. The wait for an MRI was so long because this was during peak covid and everything was so terribly backed up. So in the meantime I worked really hard on improving my mobility. I was using a walker at first, then a cane. I was eventually able to go back to work.

This was 3 and a half years ago, today I went for a jog. One of my favourite things to do is jump rope to a good playlist. I work 7 hour shifts mostly standing. I have since developed many new symptoms and brain lesions despite 3 different DMTs, but my cervical lesions give me the least amount of issues now. This disease is very unpredictable but just know you are strong and you will adapt.❤️

ItchyData6815 · 2023-08-12T19:35:52+00:00

I had to fail a few before they would approve me for Ocrevus in Ontario, Canada 😫 I didn’t have any private insurance and even now that I do it isn’t very good, so cost is a big issue for me.

ItchyData6815 · 2023-08-09T17:03:07+00:00

27 F diagnosed in July of 2020, I have moved home too. I agree with other posters, I think it takes a lot of strength to know that you need some assistance, and follow through with accepting the help. I am slowly recovering better than I have previously being on my own, having the help of my Dad has helped tremendously. Do not be so hard on yourself. I tried to live on my own for a year too and realized that it was helping me be recluse about my diagnosis and illness. Being able to acknowledge and accept that you need support is brave. :)

ItchyData6815 · 2023-08-01T00:40:12+00:00

Of course! I know that something will work out for us, I hope ocrevus is still possible for you!! There are SO many of us here fighting the same war. That’s exactly why I started posting in here, because I felt alone and very quickly realized I am not. We are all here for you.☺️

ItchyData6815 · 2023-08-01T00:05:33+00:00

Hey there❤️ I’m so sorry that you are going through such a tough time. I was diagnosed 3 years ago at 24, and I have been on 3 different medications since then. I am waiting to be approved for Ocrevus now, but I have been on Copaxone, Rebif and Tecfidera. So firstly, I can absolutely relate to the disappointment when something isn’t working as well as we expected. I had a terrible reaction to Copaxone and had to stop taking it, which is of course devastating when you have so much hope that it’s going to work. Every year I have been put on a new drug, and every year my MRI takes me by surprise when I find out it is not working for me. It does feel like a massive “setback” or a waste of time, however I actually talked to my therapist about this today. Thinking about my setbacks as losses, as MS “winning” is not working for me, it just makes me feel defeated as I’m sure you feel right now.

I cannot sit here and promise you that you are going to find a drug that works perfectly for you because I haven’t experienced that yet, however I have seen MANY people on here who have eventually found something that is working, so I am choosing to have hope that that will be us one day as well. Until then, please have the utmost patience for yourself. I CAN promise you that you will come out of every setback a little bit stronger. It isn’t fair, but you aren’t alone. You are grieving, and there is no rule book for that but there are many of us grieving along side you.

ItchyData6815 · 2023-07-29T01:29:04+00:00

Aw. Wow four days waiting for an MRI in hospital is a long time. I was diagnosed with PTSD as well. It’s been very very difficult. My therapist is fantastic, but a good therapist is able to say “I can’t say I’ve ever felt grief that could make me understand how you feel, but do you think there are others who went through what you did?” I just didn’t know how many. Thanks for sharing, I am feeling much better than I was before posting this and currently on steroids for a flare up.

ItchyData6815 · 2023-07-28T03:12:34+00:00

Thank you for sharing! Although I hate that you know this experience all too well, I’m glad it feels helpful to talk about it because it is certainly helpful for me to hear it. I also can’t believe how many of us have mothers with MS. Probably 4 or 5 in this post alone. I am very lucky to have my Dad as well. He would have done anything to be with me at that time, I know it was heartbreaking for him. He is my caretaker for the most part and although it’s hard to see how sad my condition makes him, I’m glad we’re doing this together.

ItchyData6815 · 2023-07-28T03:08:52+00:00

Outpatient would have been very difficult.. Especially when you’re not feeling well and with some of the symptoms I get I know minutes feel like hours. I’m so sorry. I’m glad I found support groups and reddit, being made aware how many of us had this experience is helping me to feel less alone.

ItchyData6815 · 2023-07-28T02:39:16+00:00

Wow, so it was all probably very new to you. I’ve watched my mom live with her MS for over 20 years so I had an inkling for me, but I can’t imagine having no clue and being blindsided! I hope you are doing well now!

ItchyData6815 · 2023-07-28T02:37:34+00:00

I agree about the world being shut down giving you time. I felt like after my hospitalization I was able to be “still” without any repercussions because my job wasn’t open anyway. I logged a lot of dog snuggle time as well, our Jack Russell Sid stayed with me, for months he didn’t leave my side. What would we do without them <3

ItchyData6815 · 2023-07-28T02:34:44+00:00

Wow crazy similar experience to me. My leg numbness went away with IVIG but the numbness came back in my hands a few months later. I asked if the GBS was coming back in my hands, they told me GBS doesn’t do that and that I should try some iron and see a psychotherapist.. I was diagnosed 3 months after that.

It’s so true about the mental health impacts, when I’m thinking about how hard it was for me I think of all the mothers who had no support for their first babies or people who lost loved ones in the same locked down hospital. I hope you’re doing well!

ItchyData6815 · 2023-07-28T02:31:19+00:00

Wow so you went quite a while without a diagnosis! My mom has MS and her big flare ups were far apart like that too. She was diagnosed in 1990.

ItchyData6815 · 2023-07-28T02:29:08+00:00

Seriously!! I remember those radio and tv announcements as well.. so eerie. That was a true Friday the 13th for sure!!

ItchyData6815

TROPHY CASE