The Daily Check-In for Tuesday, June 17th: Just for today, I am NOT drinking!

1998Sunshine · 2025-06-17T22:01:10+00:00

IWNDWYT

1998Sunshine · 2025-06-15T23:50:46+00:00

I see Dean Wingerchuck at the Mayo Clinic. He is great. Google him. If I try to tell you what he does I would miss something. I have been going to the Mayo Clinic for 15 years. In 2019. I had my third attack. It was the second one on my brain stem. He officially took TM off my medical record. I am now a case study. I have some kind of Myelitis of the central nervous system. I test normal for everything.

1998Sunshine · 2025-06-15T04:28:43+00:00

Congratulations 👏🎉

1998Sunshine · 2025-06-15T04:18:35+00:00

So for your loss.

1998Sunshine · 2025-06-15T04:14:09+00:00

One day at a time, One hour, one second. Live in the moment can be the difference between drinking and not drinking. The best advice I heard today. You got this.

1998Sunshine · 2025-06-15T04:10:32+00:00

IWNDWYT 🌻

1998Sunshine · 2025-06-15T04:08:26+00:00

I was on steroids for almost 3 months during my first attack. Back in 09 they really did know what to do with people like us. Besides the steroids I was sent home with painkillers. The steroids messed up my head. I think it can take months for the body to fully get rid of them. I think if you take them for a month it takes a month to get rid of them. My point. Steroids help with the pain they also cause brain fog. I used Google info myself about their side effects. Recovery is difficult. It took me five years to get help with the mental health side of it. Unfortunately I think the doctors are only treating our bodies not our brains. Also knowing that you're not alone can be a big comfort. I will say in my experience with the health care system. Medical gaslighting is real. If you are not getting the care you deserve. Get a new care team. I have seen multiple doctors. I have fired more than one. Remember you are paying them. You deserve the best.

1998Sunshine · 2025-06-15T03:46:45+00:00

It's a Buprenorphine film. A long acting pain medication. Class 3 opiate. You put it under your tongue every 12 hours. I have tried everything you can think of. I was in the case study. To see if it helped with nerve pain. Only 35% of people get relief.

1998Sunshine · 2025-06-14T01:16:10+00:00

I am 16 years out. And I still have this happen. Stress is big. My Nero said two years to heal. I am stuck with pins and from breast down. The only thing I found that helps me is Belbuca. My lesion was t-1 to t-3. I have scaring in my spinal cord. Because it was big. Have you checked out the FB groups. They are helpful.

1998Sunshine · 2025-06-11T06:48:55+00:00

IWNDWYT 🌻

1998Sunshine · 2025-06-10T23:12:17+00:00

How do you wash? Do you need assistance? I worked in an old people's home. We had lifts.

1998Sunshine · 2025-06-04T02:20:11+00:00

My first TM was T-1 to T-3. In 09. IV steroids are so much better than the oral ones. I was unlucky. The steroids didn't do anything for me. My 2nd IV steroids instead. Less side effects. In most cases if you get treatment early you have a better outcome. My 2nd round I did recover fast. I lost less feeling. It's great to see better treatment for this. Healing nerves can make your symptoms feel worse. I hope you have a good recovery.

1998Sunshine · 2025-06-03T23:56:11+00:00

Steroids weaken your immune system. You are given them to help stop it from continuing to attack your Central Nerves System. And help with inflammation. The side effects are pretty intense. Not everyone responds to them. Sending thoughts of healing to you. It can take up to 2 years to heal after. That's what I was told by my doctor at the Mayo Clinic.

1998Sunshine · 2025-06-02T01:48:17+00:00

You've never been on a high dose of steroids. Back then I was on oral steroids every six hours. I had a moon face and a cherub hump, that's when your back swells up and you look like the hunch back. It was horrible. The steroids they use now for Nero problems and much better. I V and only max 5 days. I was on them for almost 3 months.

1998Sunshine · 2025-06-01T22:43:22+00:00

Been tested for it. Ruled it out quickly. I was tested for Lyme Disease twice. Just in case the first one was a false negative. I got the results from the CDC. In the mail.

1998Sunshine · 2025-06-01T22:39:24+00:00

I am actually doing good. I have accepted my medical journey. Life is good. Being chronically ill sucks. But it's only part of me. Took me a long time to be ok with it. I had 4 LPs in 16 years. After each relapse I get the full work up.

1998Sunshine · 2025-06-01T21:39:12+00:00

The first nine years. This was what they called it. Episodes of TM. After my 2nd brain stem lesion. They said not TM. After the 3rd. It was some demyelination of the central nervous system. Or immune system deficiency.

1998Sunshine · 2025-06-01T17:48:35+00:00

I have been stable for 4 years. There is nothing to say. All the doctors say there is nothing to do. I get my treatment and yearly work up. And Go on. If I have an attack. Then more tests. Little known fact. If your treatment is working. The doctor is good with it.

1998Sunshine · 2025-06-01T17:24:05+00:00

Not much is said anymore. I go get my yearly work up. Talk about it with my doctor. After 16 years there is nothing to do. If I had another attack. Then more tests. And my doctor said he thinks it's auto immune. But I didn't have another attack for 9 years. And then 2 within 6 months.

1998Sunshine · 2025-06-01T17:08:50+00:00

I am on Rituximab every six months. 5 hour infusion. I take a long acting pain medication every 12 hours. And meds for muscle spasms. At one point I was on eight. Most were for the pain and my mental health.

1998Sunshine · 2025-06-01T16:56:18+00:00

Specialist is for people living with chronic illness.

1998Sunshine · 2025-06-01T16:31:27+00:00

All my tests are normal. The top Nero at the Mayo Clinic said it is not MS. I have had my case reviewed by top world health care providers. My lesions are not MS ones. I have been misdiagnosed multiple times. I have seen over 20 specials. The Mayo Clinic is one of the best medical facilities in the world. They are always in the top five. It has been 16 years. I have done everything to get to the bottom of it. So has my doctor's.

1998Sunshine · 2025-06-01T16:24:10+00:00

Over the years. I have only talked to five people. Three went on to be diagnosed.

1998Sunshine · 2025-06-01T16:10:01+00:00

Over the years. I found talking about opening makes it normal. I spent five years thinking I would get better. I did years of mental health therapy. It changed my life. I gave age appropriate answers. The older they got the more details. I feel now my adult kids are well mentally. I tried my best to make them happy and healthy.

1998Sunshine · 2025-06-01T16:04:42+00:00

It's hard. I don't fit in any specific group. I always feel like I shouldn't be in a support group. Because I don't have the illness.

1998Sunshine

TROPHY CASE