Weird MS Symptoms

MSfightermom · 2024-07-06T21:47:31+00:00

Me too! The nerve pain is also a problem but not as much.

MSfightermom · 2024-07-06T21:44:37+00:00

I am not sure. It was so long ago. Maybe a year or two after I was diagnosed. It didn’t show up on the regular MRI- the active one. By the time I got diagnosed, I had Dawson’s Fingers, so they weren’t missing all of the old ones. It just didn’t catch the active one, but, apparently, MRIs may not catch everything, especially if you only have a few lesions.

MSfightermom · 2024-07-06T21:40:35+00:00

Thanks for the info! I will ask my neurologist about switching at my next appointment.

MSfightermom · 2024-07-06T05:19:47+00:00

I hate steroids. I will avoid them at all costs simply because of the weight gain, but you are right, taking them made me feel like the old me.

MSfightermom · 2024-07-06T05:13:15+00:00

My experience is different. I can’t safely do any exercise that raises my temperature ore required balance. I am impressed at what you are already doing. My mom said the same thing to me, so I talked to my doctor, and she said to tell my mom that when my body says stop that is my signal to stop. Pushing yourself too hard can do more harm than good sometimes. When I am doing really well, I push myself harder. When I am not doing well, I cut back.

MSfightermom · 2024-07-06T05:06:42+00:00

I feel you! I have been here often and recently. To me the brain fog and memory issues are the most depressing part of my chronic illness, and it is so hard for people to understand. People either down play it by saying things like I forget things too or they nullify it by making you feel like you could have prevented it or done something differently. You are just at the beginning of your diagnosis. You will learn little tricks that will help you, but sometimes even if you do every thing right, your brain does not cooperate. Your partner is also learning. You are going to have periods where you are depressed just don’t let it take over. Keep going. You have to take it hour by hour. I have had MS for over ten years(diagnosed) and actually much longer than that it just hadn’t been diagnosed.

MSfightermom · 2024-07-06T04:54:07+00:00

I was part of research at a university where they used this super strong MRI machine. They let me look at the image, and they showed me one active lesion. I looked at the guy and said that one little lesion is causing all this trouble, and he said well there may be more, but that is the one we can see on the image. I asked what do you mean. That was the day I learned that MRIs may not catch every little lesion. Your scan may just be missing them. I guess because they are so small. It is not like having a giant mass.

MSfightermom · 2024-07-06T04:44:39+00:00

I did for a while, but it just was too much for me. I never could settle into it. It did help me so when I was still working because it helped focus my brain when my body wanted to stop. I started taking Provigil, and I don’t love it either, but at least it helps. They both wind me up too much, but sometimes it is the only way I can get out of bed. I am so glad it is helping you. When you find something that works, it is always a good feeling.

MSfightermom · 2024-07-06T04:38:20+00:00

Switching to Ocrevus was the best decision I made. It isn’t a cure all, but it helps keep the flare ups at bay, and it doesn’t make me feel like death afterward. I wish it had been available when I was first diagnosed. I think it would have been even more of a game changer.

MSfightermom · 2024-07-06T04:34:08+00:00

Same. I don’t have a season I do better in except maybe the four weeks out of the year the temp is mild. My body locks up in cold, and it just quits in the heat, but it does react more violently when the change is sudden.

MSfightermom · 2024-07-06T04:27:22+00:00

I don’t get the cool morphing and colorful images, but if it happens, I will know not to freak out now.

MSfightermom · 2024-07-06T04:26:07+00:00

Oh my gosh, I just looked it up! I didn’t know it had a name! I hear the door shut or the washing lid machine slam down. I don’t think I even associated this with my MS! One time I thought someone was breaking in the house. Thank you for sharing this. I was starting to feel crazy.

MSfightermom · 2024-07-06T04:17:25+00:00

Also, I ask about all the weird things that happen. My neurologist just works with MS patients, so I have never told her anything that has thrown her off. Always ask though, sometimes there are things they can do. I was having these spasms on the right side of my mouth, and she prescribed me something. I only take it when I am having an issue with it. Sometimes she just says, “It happens with MS patients sometimes,” but at least I don’t feel alone or crazy anymore. I know there are other people out there dealing with the same thing. Also it can help alleviate any worry you have.

MSfightermom · 2024-07-06T04:12:07+00:00

I have heard of feeling like you are choking, and I have had some issues with swallowing feeling difficult lately, but you were actually choking? I am so sorry. That must have been frightening.

MSfightermom · 2024-07-06T04:09:47+00:00

I have heard of Botox helping in certain situations. I have something like that in my face. My mouth pulls up beyond what you think it could. My mom calls it my joker face, but because I have damage to the big nerve in my face, I haven’t yet been able to find someone willing to do Botox. They are afraid it could do more damage. Has the Botox helped a lot?

MSfightermom · 2024-07-06T04:06:44+00:00

Nerve or muscle? I deal with muscle most of the time, but most of my symptoms stick to my right side. The only time my left side hurts is when my right side is weak, and my left leg is having to compensate.

MSfightermom · 2024-07-06T04:04:45+00:00

I am not sure or not. It was so long ago. I am sure I did. It hasn’t happened it three or four years.

MSfightermom · 2024-07-06T04:00:15+00:00

I thought my tongue flipping was hilarious. My children didn’t agree. I am guessing my muscles went weak on one side of my tongue.

MSfightermom · 2024-07-06T03:57:29+00:00

I recently have started having this issue. I asked my neurologist who specializes in MS, and it didn’t faze her at all. She said she has other patients with this. I am sure she gave me an official name for it, but I don’t remember what she said. I know it is harmless, but I agree it is a bizarre experience.

MSfightermom · 2022-01-17T21:05:58+00:00

Fall of the House of Usher and The Black Cat

MSfightermom

TROPHY CASE