My name is Daniel. I am 28 years old and was diagnosed with MS when I was 21. I've never actually met another person with MS (outside of the briefest of interactions with those in the infusion center), and I guess I'm writing on here because, well, I have so many questions. No, not technical or medical questions, but questions about personal experiences. For instance, sometimes my eyes do this weird thing where they, like, malfunction almost? And I'll get vaguely nauseous and sorta dizzy, too? Or some days I'll wake up, like today, and my legs, for no reason at all, feel incredibly heavy and tired and sore? And the fatigue? I've tried, for years, to explain the fatigue to my girlfriend, my parents, whoever, but somehow I don't ever feel as though I'm accurately articulating how it feels, and perhaps some of you have figured it out. Because like I'll say I'm "tired" or whatever, except this sort of tired, as I'm sure you all know, isn't the normal kind. It's not like I'm just sluggish or didn't sleep well. It's more like, not to be dramatic, but it's more like my brain's turned off? Like I almost don't have any thoughts? And I'll kind of enter a zombie-like fugue state? Does that sound familiar? And I spend a lot of time---like so much time---lying on my side with my eyes closed, "recharging." Which is beyond frustrating because, for chrissakes, I'm 28, not 108. Also, lately, I've been getting these headaches that seem invulnerable to any pain-relieving medication? On days like today, when my MS symptoms are activated, I find myself feeling quite isolated and alone. The symptoms themselves are just so... so... so particular, and yet, also so vague and strange.
Anyways, I look forward to reading what you all have to say.
Thank you.
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Db0712
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Welcome to the forum, Db0712 , aka Daniel! We are all here to help because together we are stronger. You can visit mymsaa.org for more information. I look forward to hearing more from you. 🤗
Welcome, Daniel! I won't be much help, because I'm on the verge of crawling in bed with a bad headache, but everything you're feeling is now normal. Hopefully, your symptoms follow some sort of pattern so that you can prevent some of the things or get them treated right away. I'll try to be more coherent later, but this is definitely a brain-fog day for me.
Hi Daniel, Everyone here has given you good feedback. This group has been really helpful to me too. I just want you to take heart that everyone is very different. Both my younger sister and I have MS. My Sis was diagnosed young like you and is now 45 and her MS has barely advanced at all since she was diagnosed. She has had barely any progression at all and feels pretty good most of the time. I was diagnosed at 41 and my symptoms have gotten steadily worse and I now need a walker to move around at all. I have terrible fatigue and a lot of back, arm, and leg pain in my muscles. I lost some vision in my eye , but it came back after about a week. Keep doing your disease slowing therapies. I wish I had started much younger. This is hard for me to do but when I do it I feel much better lol:- Stay away from sugar, excessive salt, and processed foods and you will feel better. Stay hydrated and give in to rest when your body says rest. A lot of people feel worse when they get too hot. I feel worse when I get too cold too. One good thing I have also noticed is that people tend to be very helpful and kind to me in public places if I use a cane or walker. It’s great to see kind people. You will have bad days and good days. Enjoy being alive, practice being thankful, and give in to pizza and chocolate once in a while lol- PS Yoga helps with the tight, tired, muscles, and stress. Don’t forget you may become eligible for handicapped parking and even property tax exemption for being legally disabled in some places. Best of luck to you!!😄
Hi, nice to meet you and welcome! The eye thing - in my experience - is super aggravating! I have found that it is optic neuritis. The eye dr prescribed me medicine, some times it works, mostly it doesn’t. The only thing I have found is that sleeping helps. Most of the time it stops when I wake, Please be careful about the leg thing. I just dealt with it and hoped it would go away, it never did. I fell. I broke two bones in my leg and sprained my ankle. I had a cast from my toes to the top of my thigh, it was not fun. I don’t want that to happen to anyone. It was horrible. I can hardly walk anymore thanks to drop foot. So wheelchair it is. The hardest thing for me is slowing down and accepting that this is the way it is now. I don’t like it. I know, no one does. As for the tired - no, it’s definitely no where near what others think of as “tired”. I read somewhere that it takes someone with MS 5 times the amount of energy to do anything as opposed to a “normal” person. I know this isn’t very helpful and I’m sorry, I hope you figure out what works best for you. The best “cliche” is to listen to your body and do what it tells you. Easier said than done. Good luck and best wishes with everything!
PS this is a great place to come for people who actually know and understand what you’re going through
Hi Daniel, and welcome. First, let me say that you have found a great forum to get lots of M.S. info from the folks who are living it every day. Glad you found us.
Everything you are asking about in your post sounds like "typical" M.S. stuff, although M.S. day to day life is anything but "typical". I often refer to living with M.S. like a roller coaster ride. Every day is an adventure with some weird thing happening. I'll try to address a few of your questions. The heavy leg feeling is fairly common. I have dealt with it on and off for many years. When it hits, I call it walking in concrete. My legs feel like they weigh 800 pounds and it takes a lot of effort to drag them around. For me, it usually doesn't last too long, a day or two, but it is very frustrating. The overwhelming fatigue you describe is also very common. It can be quite hard to describe M.S. fatigue to others, as they think you're just "tired" when that doesn't come close to what you're feeling. It can be debilitating, and lifting so much as a coffee mug can be too much to handle. Getting dressed can be exhausting.
That brain fog zombie-like state - also pretty common. There are just days where your brain feels like it took the day off. I call this cotton head. I have trouble finding the right words, mix things up, can't remember easy stuff like what to call a "table" or "chair". This symptom is also very aggravating, but I've learned to adjust and live with it.
I am so sorry you are dealing with this and feel so isolated. Forums like this one are here for you to reach out to others with M.S. because although your friends and family may be understanding and sympathetic and supportive (which is wonderful), it's those of us living with this crazy, unpredictable disease that really, truly understand what you are dealing with.
I hope I have helped clear up at least a few of your questions. Always remember, if you have new symptoms that last more than a few days, it's a good idea to check in with your treating Neurologist and run it by them. Take care and a happy New Year to you.
Hi, Db0712. I'm so sorry that you're feeling so alone and have lots of questions! We have all felt that way, sometimes on a regular basis. 😁 I'm very glad that you found us. You've gotten some great replies so far, but wanted to add that just because it feels like your legs are going to stop working, does not mean they are going to! It's usually temporary, like if you're sick, hot, or really tired. But if it really bothers you, you can ask your doctor about a medication called Ampyra (generic is dalfampridine). It doesn't help everyone, but sometimes it can really make a difference.
There is legit MS doctor on YouTube named Aaron Boster. His videos are all about teaching you about MS so that you can take better care of yourself and know how to talk to your doctor and advocate for yourself. He's also really funny! Please do yourself a favor and check out his YouTube channel.
I hope you'll stop by often and let us know how you're doing. I wish you the best!
Another PS! I love that you called yourself an MS-Haver! I think you should stick with that. 👍 Others use MSer, or the other one I prefer, PwMS. It's mostly used in the UK and I think Australia, and it stands for People with MS. Since almost all of us in the community have it (althoughsome are family members), we don't really have to use a name for ourselves.
Welcome! I know it feels lonely but trust, you are not alone! ALL of those symptoms are unfortunately very familiar. The fugue state feeling I have described to others as "safe" mode on a pc after it has crashed. The power is on , but it's not operating functionally. In the beginning of my MS journey, it really helped me to join a local support group.
Welcome Daniel. As others have said, all your symptoms are typical MS. For your cognitive symptoms, the cognitive fog, you should ask your doctor about getting some speech therapy. They work with cognitive skills as well as speech. As for your headaches, some people so suffer from migraines, so you should ask your doctor about that too. As for the fatigue, stay as active as possible. I'm days away from turning 70, and I do 5 exercise classes a week. Try to keep your body moving as much as you can. And yes, do try to find a support group, it helps when you're around people who know exactly what you're going through. This forum is great too. Stay in touch.
Hi Daniel and welcome! I’m so glad you found this group. Definitely understand how you’ve felt. I have a very supportive family, but they will never completely understand how I feel. I’ve experienced many of the same things you have. My husband is beginning to understand this when I say I don’t feel well. He asks if it’s MS I don’t feel well or something else, lol.
Unfortunately, MS is very difficult to describe. Are there really even words to describe how we feel? I’m not sure…but, hang in there and take care of yourself the best you can.
Welcome! You are not alone, but it feels that way and it's frustrating to describe symptoms to people who can't understand. What they can do is accept you have moments or days where you have various limitations, and learn to roll with it.
When my eyes or legs get funky, that's my signal to take a rest. Super annoying when you wake up with it, right? Ignoring the signal requires a price to be paid later. Maybe an early bedtime, maybe all plans after lunch are out the window. You're already doing it with the recharge. It's like your body is a toddler now, and there will be tantrums if it doesn't get its nap.
Headaches are more common with MS. I don't get them, but if I did, I would start with magnesium threonate (however it's spelled, look on amazon) and an extra glass of water. I take it most nights for its other brain benefits, supposedly. An epsom bath can help headaches and legs.
Yep, it's a frustrating surprise variety package of bs you never did anything to deserve. My warning to young people with MS is to mind your attitude/inner thoughts. It's not pretty when you feel your youth/life has been stolen, then you move down into a black hole of wasting what you do have. Try to avoid that. Sarcasm is my therapy 🤣
For learning about MS symptoms, MSAA has a great newsletter, website, and this group of real people. The old posts are searchable, if you have a specific issue you want to see how this crew gets on with it. MSelfie is an amazing resource, and i would start with the new to MS section.
My last thought is that you are so young and need to be living your best life. I wish when I was your age that someone told me about how ketosis would help my fatigue and brain fog!
I describe fatigue like this: our bodies are like vehicles and our energy is the gasoline to make them run. Healthy people start each day with a full tank of gas. People with MS or other health problems, are lucky to start with a quarter tank of gas. In addition to that, healthy people are driving the most fuel efficient cars getting 40 or more miles a gallon. We are driving gas guzzlers that average 6-8 miles a gallon. So not only do we start with less, we use it more quickly.
If we are fortunate enough to have a great day and get more mileage, it puts a puncture in our tanks. The next few days are even worse than normal because we have to wait for our tank to repair.
I've always wondered about how we got started talking about spoons as units of energy, and about using our tiny "energy" reserve wisely. I've always thought that gas is a much more logical comparison!
I'm so glad you searched us out but sorry for the reason. You have already received lots of helpful information but as you go through this journey you will find that even though we sometimes have the same changes as another person, we don't always respond to treatment in the same way. Try to be open to trying lots of different ideas and hopefully something will work for you. Dr. Aaron Boster is a great resource and another great example to describe fatigue is "The spoon theory", check it out on the internet.
My sister got this in her mid 20's but back then they didn't have MRI's of DMT's so she had a much harder time than I did getting diagnosed in 2008. There is a lot of interest in MS and many new meds and research is being done. Hang in there the best you can and check back in. Hugs and Prayers, Kathy
Any big diagnosis sets us apart from others. The feeling that it is only ourselves who must handle it can be very lonely. I just read an expression: “The only people to “get” MS are the people who get MS”. This is a community of people who truly understand, even specific, vague symptoms! That really helps a lot. What we all want, need, is for those closest to us to really “get" MS as best as humanly possible. I found your descriptions to be very good, but I googled to try and find something I read years ago that helped me explain it in very practical terms. It was stuff like… It is like wearing a tight resistance band from shoulder to hand that must be stretched out to move your arm. Or it is like wearing high heels and walking on rocks. Things like that. It got through to people, but unfortunately I can’t find it. As Helpmeup said, our bodies must work harder to do many things, thus the fatigue. I hate thinking about you feeling alone and hope you don't have to deal with guilt or defensiveness when resting. Best wishes.
I apologize for replying so many times because I can't get my thoughts together, but I did have another suggestion that could help you. Others may have mentioned this, but there are medications to help with fatigue. They aren't perfect, to be sure, but it's definitely worth mentioning to your neurologist. Neurologists are there for more than just giving you a disease modifying therapy (DMT), running you through the MRI machine, and treating relapses. A big part of of their job is managing symptoms., so be sure to tell your doctor if there are symptoms that are really bothering you.
As others have mentioned, avoiding sugar, drinking enough water, and getting as much exercise as you can without completely wearing yourself out can help with fatigue.
Db0712 gladto meet you. you put your words just like we feel..thank you couldnt have said it better. keep you chin up and when its down..this place can lift you up
Hi, Daniel. The fatigue is like walking up a hill with about 6 or so sand bags strapped to you. We exert a lot more energy trying to just..... function. Riding my recumbent bicycle helps, but I have been negligent there lately. But mild exercise does help. Watch Aaron Boster on YouTube. He covers many aspects of living with M. S. I quarter a drug called Armodafinil. It helps with the energy thing. But, I have to quarter it, because a side effect (for me) is that my eyes burn. Weird side effect, but it does help.
I am sorry about your headaches. Sorry, I cannot help you there, but maybe talk to your doctor?
These folks here have much more experience then me. (just 4 years in, myself). Stay in touch here! They are good people!
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