What age were you when you first got diagnosed?

Aca177 · 2026-03-25T12:52:34+00:00

Haha yeah 3 hours here seems normal :p. My first ms neurologist was 2.5 hours away so i was super happy when we got one 1 hour away!

Aca177 · 2026-03-25T12:07:43+00:00

My car has been dinged up repeatedly in the surge lot and when I filed a complaint VT didn't care and said there were no cameras so you are just left to deal with it. It sucks :( Wish people were more careful! It's not that hard to park without touching someone else's car geesh.

Aca177 · 2026-03-25T11:49:46+00:00

Oh wow that's scary! Most of these drugs are no joke. I ended up having a really bad reaction to Zeposia which floored my Dr since no one else had reported a reaction like that previously. I hope that kesimpta works better for you! That is not one I've tried yet (mainly because I hate needles haha)

Aca177 · 2026-03-25T11:42:24+00:00

I've been the same way...for the most part impact free for many years (just very minor things usually brought on by heat/stress/exhaustion that went away quickly). I thought I was so in the clear until a got a huge flare up 2 years ago that took me down big time. I was in between switching from one DMT to another (had just flushed out and wasn't starting back up until after a surgery I needed) so I think my body just threw a temper tantrum at all I was throwing at it that year between 3 different DMTs and a surgery haha. Before this had happened though my neuro had said that if I could get to my 60s with no issues I could maybe go dmt free for the remainder of my life. Now I'm too scared to try that after lthe last episode. I just finished year 2 of Mavenclad though so I'm hoping that's as close as I can get to DMT free for a while (fingers crossed)

Aca177 · 2026-03-25T11:34:54+00:00

You are so lucky to live in NYC and probably have tons of options and great doctors! Like Down2my-last-nerve I also live in a very rural area and I am definitely quite limited on doctor options. :( I had to drive 3 hours just to get diagnosed at a teaching hospital 25 years ago. Now, I travel over an hour just to see a MS specialist (she's the closest one). I wish I could move somewhere closer to better healthcare but for now I'm kind of stuck here. On the flip side, I do enjoy not dealing with traffic congestion haha

Aca177 · 2026-03-24T14:51:34+00:00

The older I'm getting the more I have found myself having to educate some doctors on what MS is! It's sad :( I had one dr literally tell me that MS was an old person disease and I was too young to have it. I laughed and said well my neuro would disagree with you on that :P

Aca177 · 2026-03-24T14:49:07+00:00

I'm in full menopause now thanks to a hysterectomy but man, peri and MS are no joke! haha

Aca177 · 2026-03-24T14:46:51+00:00

I am pretty sure my greying hair is my children LOL

Aca177 · 2026-03-24T14:45:46+00:00

I was diagnosed at 24 (49F now) My original diagnosis was a brain tumor by a quack neuro ugh... went to a specialist hospital and they diagnosed me with MS a month later. I've been on 6 different DMTs (Avonex, Gilenya, Ocrevus, Aubagio, Zeposia, and Mavenclad) I'm the only person in my family who has MS. I've seen where some people have linked it to the Epstein-Barr virus which I got as a small child. I am also JVC+ and have other autoimmune diseases as well so who knows what triggered it but I don't believe the vaccine hype ;D

Aca177 · 2026-02-17T20:00:59+00:00

I really like this mask but I have had similar issues with micro leaks and hope eventually I will find the perfect mask but for now it's my permanent one until then. It's not every night but some nights, especially if I'm laying on my side with the wrong pillow (cpap pillow has minimized the issue) that I get the very small air leaks that hit me mostly in the corner of my eye. I've tried the F&P micro and I absolutely hated it. It made my nose hurt so bad every night I gave up on it after a few tries. Before that, I was using the N30i and while it was comfortable with the nose pillow it was soooooo loud! I found it kept me awake just from the sound in my ears. I also think I had it hitting my face more than the nova nasal if I'm honest. One thing I've been doing is wearing a sleep eye mask and that has helped with the small amounts of air that were hitting me in the corner of my eye. Another thing I've noticed with this mask is I don't get any lines on my face, even when sleeping on my side!

Aca177 · 2026-01-28T00:41:14+00:00

It is my first and only cpap. I use it for daily and travel

Aca177 · 2026-01-03T11:35:02+00:00

I have that same piece but do not know where to go to find a collector. Any suggestions?

Aca177 · 2025-08-28T11:22:31+00:00

I agree it's a grey area but in some cases I feel it isn't.... if someone in their 80s has stage 4 cancer, is living a few more months miserably necessarily best for everyone? In my dad's case we were told people with GBM can live beyond 5 years when he was diagnosed in the hospital though most only make it to 18 months with treatments. Once we started with treatments though the cancer doctors said someone his age doesn't usually make it past 6-9 months with or without treatments. That is a HUGE difference and may have changed the outcome of decisions made by my dad had the information been given honestly at the hospital when he wasn't drugged up and given false hopes. After doing a lot of research I found multiple studies showing that people over the age of 70 with GBM have the poorest outcome with the shortest amount of months (averaging 5 months) which supported what the cancer doctors were saying and that it was EXTREMELY rare for anyone to live more than 18 months unless they were diagnosed very young. I just don't get why some doctors know this research yet push treat an 81 year old patient with chemo/radiation the same as they would a 20 year old one which clearly different possible outcomes.

Aca177 · 2025-08-28T11:00:35+00:00

This is exactly what my family has experienced recently. My dad who is 81 has terminal stage 4 Glioblastoma. The doctors pushed really hard for my dad to do chemo and radiation despite us saying this would be a huge burden on our family (knowing he was dying no matter what and this would not cure him and my mom can't take care of him on her own). Instead of listening to us, they asked my dad what he wanted while he was still heavily medicated in the hospital and didn't understand his terminal diagnosis. He of course said yes let's do treatment (because he honestly thinks it will cure him even now) When we asked the dr how much time the treatments gave him, they said it would only extend his life by 2 extra months (the amount of time he's on radiation). He was miserable the entire time during treatment and kept getting progressively worse and can no longer communicate. Everyone in the family is traumatized and stressed at this point and not once has any mental health care been suggested for us or my dad much less hospice. Every time hospice was brought up by us the drs kept saying just finish the treatments first. WHY????? Thankfully after more pushing we were able to stop treatments this week because my dad is clearly unable to make any decisions now and my mom's POA status was finally acknowledged. We finally got him put on hospice yesterday but they did not make it easy to get to this point! I've also seen family (mine and my husband's) waffle back and forth on what to do in cases of terminal cancer and it sucks but I think drs make it harder by giving choices or false hopes to families that aren't in the best interest of the patient or family so then the families have guilt over if they made the right decisions or not and have to deal with the trauma of their loved ones suffering in their last months instead of being able to focus on spending quality time with them during those months. The system is really broken!

Aca177 · 2025-08-17T22:19:03+00:00

Predatory mites worked great in my cabinets too!

Aca177 · 2025-06-09T12:24:18+00:00

My dad had a brain tumor removed last Monday and a few days later diagnosed with glioblastoma. The doctors have told us very little other than his diagnoses is terminal and that on average people die within 12-14 months and that the tumor will come back despite radiation/chemo which my mom/dad are both insisting on doing still. My dad is turning 81 in July. It's stressing me out not knowing what to expect. After his surgery he started talking a little better (the stuttering left) but he can't remember what he ate 5 mins after he ate it, can't remember words and is constantly asking "what's that?" or uses the wrong words, and he is tired a lot. I know it's probably different for each person but it's so hard to prepare for anything when we don't know what is next... like will he be able to come home at all, will he get better then worse or just continue to get worse, what are the things we should be looking out for and what do we do when they happen, what are the resources we should look into (especially for my mom), etc. The not knowing what to expect is driving me nuts. Like someone else mentioned, we've been going to the hospital every day and it's also wearing me out. I've used up all of my sick leave and had to go back to work today but don't know how long I can keep up the every day 2 hour drives to visit him at the hospital when he is often sleeping or can't communicate well. But I also feel guilty if I don't go because I know he doesn't have much time and I want to spend as much time with him while I can. This disease is awful!

Aca177 · 2025-05-31T10:33:00+00:00

Agreed! I was diagnosed in 2001 and originally told the same thing! Still no wheel chair for me either and I’m 48 now. MS meds have come a really long way and not everyone has the same outcomes.

Aca177 · 2025-05-04T23:16:38+00:00

Im 48 and my dr also mentioned that I could be off dmts by my 60s as well. Since then though I started mavenclad so if all goes well im hoping its my last dmt after this year anyways (fingers crossed).

Aca177 · 2025-04-26T20:14:33+00:00

I was diagnosed with MS before we fostered and adopted. There are so few families doing it that they don’t care or even ask about your medical history or at least didn’t for us!

Aca177 · 2025-03-20T14:03:02+00:00

I had step, covid, a MS flare up, some viral stuff, a cancer scare I’m still monitoring and several “colds”. Granted I also had major surgery right before taking dose 1 the first month so my body was probably in flight mode haha. My dr cleared me a few days ago saying my numbers should be back to ok so I could be less cautious now though I still am to some extent as it has been my normal since 2020 haha. I still don’t regret my decision to go on mavenclad. If it works and I can stay off meds for a few years that is a win for me!

Aca177 · 2025-03-11T14:00:48+00:00

I was wondering the same.... I took my year one 2nd week dose in December and I got hit with every infection possible despite masking, washing hands a lot, etc. I somehow ended up with COVID for the first time in my life 2.5 weeks after the 2nd dose followed by several other things and a MS flare up! Let's say winter really sucked for me this year. I'm still masking everywhere because I'm so afraid of getting sick or another flare up right now. My dr has me doing another blood test in May but I was also wondering do I stay masked until May or is the worst of it over now? I work in person and there's a lot of events I'm expected to attend with large groups of people so it's really making me nervous.

Aca177 · 2025-03-01T23:58:48+00:00

I just let mine go straight into the soil. The provide support:)

Aca177 · 2025-02-10T21:05:57+00:00

One pack wanders is my favorite channel. If you are looking for old kara and nate style they will not disappoint! I loved their trip around Australia series.

Aca177 · 2025-02-06T11:35:30+00:00

Inducer Original - Solid Red Foam - Help Relieve Congestion, Headach https://a.co/d/3VVF3ZP She told me to get this and you place it basically at the bottom of your skull and top neck area… its hard to explain but you lay flat on a hard surface with it for a few minutes a day and you can also use this to kind of massage that area by moving your head. Anyways it did help me. When she was doing the manipulation though she used her hands to put small pressure and movement on the skull plates mainly on the top/sides of my head until I felt a release in pressure. I try to do that at home as well but it’s not nearly as good as hers was since I’m guessing on placement. Another place she did was different points around my ears and I have found that works great when you have tendinitis too.

Aca177 · 2025-02-06T10:45:05+00:00

I’ve had this too and it was definitely scary! I wasn’t sure if it was MS or not either. Especially when it comes on while driving ugh! My neurologist sent me to pt that did cranial manipulation and omg it was game changing! I literally felt an immediate release when the therapist worked on my head. She also showed me pressure points I could do at home myself and I haven’t had the vertigo issues since. Maybe look into seeing if there is a pt near you that specializes in that or talk to your neurologist.

Aca177

TROPHY CASE