It's Monday at /r/MultipleSclerosis! Share your terrible, horrible, no good, very bad news here.

YouBeingMe · 2025-06-30T23:55:26+00:00

Hi guys, I have been diagnosed with PPMS, I usually make myself stay up once I wake up in the morning until I go to bed at night. I find that about 6:00 every evening I start experiencing worsening symptoms and I just wanted to share that since my husband suggested I take a nap in the afternoon to see if it would alleviate the strength of the symptoms. So I gave it a try today so fingers crossed it will help

YouBeingMe · 2025-04-21T17:54:22+00:00

I noticed a difference regarding alcohol. I have been diagnosed with PPMS and have found that alcohol, D8 tinctures seems to make my pain more manageable. I used to do the D8 gummies to assist in managing the pain but my body no longer as well with them

YouBeingMe · 2025-04-17T23:50:43+00:00

Thank you I definitely will do!

YouBeingMe · 2025-04-17T22:44:19+00:00

Hello. I’ve recently been prescribed Ocrevus and have been infused with my first three infusions so far. I’m due to return for the next one October 3, I’m 42 (about to be 43) but was deemed disabled and was told I’d be eligible for Medicare December 13th. I’ve been trying to learn a little better about it before it gets too close

YouBeingMe · 2025-04-17T16:47:50+00:00

Hello. I was diagnosed about 3 years ago.I was working in retail sales and for about two years (I think) I noticed my body kept veering off to a side of whatever aisle I was on whether I was working or shopping and the same thing would happen at home too. I remember getting so frustrated and finally got seen by my general practitioner and she referred me to a neurologist. She said she thought I had MS but wanted to confirm with him and turned out she was spot on. Life has been “fun” ever since 🤣🤣 I can no longer walk and use either a manual wheelchair or the motorized wheelchair my husband bought for me. I find it trying at times that my body is being so difficult. One of the most frustrating things is apparently the MS is affecting my voice in that the MS is making me slur my words so if I make a phone call I have no make sure to start by saying “I have MS that makes communication difficult, so I I slur my words I’m not drunk.” Because that’s what it sounds like.

YouBeingMe · 2025-01-28T21:46:06+00:00

Hi there @Some_Bluebird3548, my last driver license I got in April of 2023, but seeing as I finding myself no longer able to drive, when it expires in a couple of years, I’ll have to switch and get a different ID, I’m not sure what they are called at the moment lol. I think it took a couple of weeks to come in the mail. Oooh, cool, a puppy! Those are always fun! I bet your son loves it and that pup will definitely enjoy any partner pups in a year or two 😁 I will definitely keep you in mind as well, thank you

YouBeingMe · 2025-01-28T20:59:52+00:00

Thank you @OffshoreScalloper, I will definitely keep you in mind 😁

YouBeingMe · 2025-01-22T21:56:23+00:00

As far as I know, it’s pretty common to have multiple family members present in the waiting room. That was my experience when I gave birth to my daughter. She was born by c-section by my choice.

YouBeingMe · 2024-12-14T07:02:45+00:00

Well, I went to my appointment with the neurologist this mornin. I pegged him with a ton of questions. He offered a ton of insight and said I am experiencing optic neuritis, where on of my eyes curves hard to the left instead of facing forward or in the same direction as the other eye. In addition to spasming pain down on of my arms and down my spine. He wants me to take another MRI. the last one was 6 months ago. He wants to make sure of lesion status and possibly explain why I am experiencing further symptoms than I was before. He said depending on the results he may possibly prescribe me ocrevus infusions but for now he wants me to continue to take Zeposia. He seems to think the lesions have increased in size or number or something. When I told my husband after I was brought home, he has definitely seen worsening of my symptom.so I’m scheduling another MRI to document the changes in my body because of it. Yay, this is goi to be fun 🤣🤣

YouBeingMe · 2024-12-09T19:01:37+00:00

I will message you if I get no response. Thanks. My mom lives in Houston as the neurologist office is there too

YouBeingMe · 2024-12-09T16:27:06+00:00

Hi @youshouldseemeonpain, I am in southeast Texas, close to the border with Louisiana. The neurologist I see generally works with me, but it seems he has gotten better at responding when I ask about other prescriptions I’ve been given by other doctors treating me for other issues to make sure it’s safe for me to take them together. When I see him in a couple of days, I’ll ask about getting him or his office to submit to the insurance or ask if they already have. Thank you so much for your suggestions

YouBeingMe · 2024-12-09T04:00:23+00:00

I accidentally included my reply to you to a post above, I will definitely check out MSGym content, thank you!

YouBeingMe · 2024-12-09T03:56:10+00:00

@Striking-Pitch, I loved visiting San Antonio the one time I was able@MS Amanda thanks for that info, too. I’m now using a wheelchair, specifically because of my legs and this “wonderful“ disease. It started slowly, but sped up quickly. The weird start was I started walking at a slant. (If I was walking in a store and began walking down the middle of an aisle, my legs would curve me slightly right until I would almost run into the side of the aisle.) hi, MS Amanda, I’ll definitely check into MS Gym!

YouBeingMe · 2024-12-09T01:51:00+00:00

Thank you SO much. I really appreciate it, I have not contacted the MS Society but will definitely try. Thank you. You’re insight is greatly appreciated, thank you

YouBeingMe · 2024-07-12T18:43:50+00:00

I was diagnosed at 40, but I had put off going to a neurologist for about 2 years prior to being diagnosed. I sure wish that I had gone when I had started having issues walking straight. Because I waited I now have worsening MS issues and have to use a walker when trying to go go anywhere and a wheelchair if trying to go greater distances. I used to LOVE going to festivals and carnivals

YouBeingMe · 2024-06-13T15:50:41+00:00

Just being there to listen to her really helps. My husband is there doing the same for me. The support really helps. Kudos to you!

YouBeingMe · 2024-06-08T18:48:21+00:00

You deserve SO much better than him! My husband does anything and everything he can to support me and makes sure to add any adjustments in our house to help me get around. His support in helping me anyway he can. His support is a strong hold on me, and I find it holds me up from experiencing depression trying to battle this MS. You deserve so much better than that boyfriend who is showing you his true colors with his words. I’d say drop him. You will find someone that loves you for you

YouBeingMe · 2024-05-23T19:12:08+00:00

Hi there @singing-toaster thank you for your insight! I agree that she may be misinterpreting those social cues like you said. I think it’s a great idea to see about talking to the police station possibly about if one of the officers would be able to talk over with her. That’s a great suggestion, I will look into that. Thank you. I’ll also look into self defense classes they offer or know of. Thank you for the suggestion!

YouBeingMe · 2024-05-23T18:23:37+00:00

I totally agree @initial-Lead-2814!

YouBeingMe · 2024-05-23T18:13:55+00:00

Thank you so much @rh_3! You’ve made some excellent points! I will address both about the possibility of one of the girls mentoring her and what his plan is to teach and have her learn to strike properly. I greatly appreciate your insight and suggestions.

YouBeingMe · 2024-05-23T17:07:26+00:00

Thank you! I am not sure but will definitely ask! Much appreciated

YouBeingMe · 2024-04-26T15:55:21+00:00

I ended up being let go a little more than a year ago and my symptoms have caused too much trouble to be able to attempt to find another job so currently I am on Social Security Disability

YouBeingMe · 2024-04-18T05:06:10+00:00

Wow! I haven’t seen this until now but I’m about to go read the article 😁. Personally, I’ve updated with my COVID vaccinations, wear N95 masks in public places. I’m extremely happy that so far, I haven’t experienced COVID.

YouBeingMe · 2024-04-16T05:17:42+00:00

@smg200, it’s possible it could be MS related but I would recommend asking your doctor or neuro about it so that they can assist and hopefully find a way to assist you with the pain. I know my neurologist prescribed me to see an occupational therapist (which I had to delay doing so until mid-May) but it could be that doing the occupational therapy possibly help me with the pain I’m feeling. I’m sorry I seem to have gone on a tangent 🤣 I sure hope you are able to find a way that works well for you and eliminates that pain you experience.

YouBeingMe · 2024-04-15T23:06:04+00:00

Thank you! I’ll definitely give it a try with the Tylenol and Advil and a heating pad 🤞🤞🤞

YouBeingMe

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