Prior to approximately a month ago when my first symptoms started and my diagnosis I was so different. I woke up feeling good and happy. I had tons of energy every day.
Boy has this changed. I go on my walks, runs or trainer. Please don't get me wrong, I am so grateful to be able to do the things that I know so many of you can't. However, I am so tired after doing what was typical for me. I also cry so damn easily now. I feel on the edge of bursting into tears all the time. Part of me understands that the tiredness is from the insane stuff my nervous system just went through.
Do this stuff happen so fast like flicking a switch?
I kind of feel like I am losing my mind to this incredibly emotional mess of a person.
Has anyone else experienced this?
Is it going to stop?
Thank you for taking the time to read this.
Written by
Szs3eb
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It takes time. You're in shock, grieving, and still trying to carry on with your life. It'll never be the same again, yet you'll find your new normal. Just be patient. For a little while, focus on doing things that make you happy instead of the things you think you should be doing. This is a time to pamper and humor yourself.
Hang in there, it is an overwhelming diagnosis and adjustment period but it will get better. Learn as much as you can about ms from reputable sites and stay away from the doom and gloom posts/people. This is your journey and although there are common symptoms many share, everyones ms is different. Listen to your body and don't push it too hard as you are recovering.
Hi Szs3eb, so sorry you are having such a difficult time adjusting to your MS diagnosis. It's a hard thing to adjust to, and you will go through all the common stages of "grief" going from denial, anger, bargaining, etc. Breathe!
Wow; your current symptoms sound sort of like what I am going through currently with my first year of menopause. But, I can recall when I was first dx, at the young age of 26, over Memorial Day weekend of 1994. There weren't any treatments available back then, the neurologist told me that "young women tend to do very well with MS." For me to live my life, etc.
Well, three years later, I returned having vision problems, or so I thought, it turned out I had a lesion on my thalamus that was causing the vision problems. The new MRI in May 1997, showed a substantial silent progression, meaning I had many more lesions on my MRI than I did in May of 1994. He told me I was LUCKY THREE times and to start Avonex ASAP.
He scared me straight. I am a huge needle weenie but learned how to give myself weekly intramuscular injections. Fear can be a great motivator. I faithfully gave myself my Avonex injections. I was on Avonex for twenty-five years.
In April 2023, I switched to Aubagio. I was tired of the injections. I thought the hair loss would be okay, since I went on SSDI (medically retired at age 45). Hair was so over-rated, I thought, I can rock a baseball cap, if a once-a-day pill keeps my MRIs stable and my neurological exams stable too, sign me up. The hair loss is very slight, btw.
With the pandemic, I didn't want to do Ocrevus or Keisimpymta (sp?) the monthly injection had just hit the market. I was sort of afraid of the B cell depleters, but I do know that Aubagio suppresses both T and B cells. But, I'm happy with my decision. I am enjoying the once-a-day pill.
Since my diagnosis thirty years ago, I've been through many obstacles, my divorce, the death of both of my parents, finally having to say yes to the MS and realize that I had to retire early. But I am blessed because I am living in the home that I grew up in. I try to count my blessings and stay positive. But somedays are easier than others.
Please be patient with yourself. The MSAA Chat here has helped me greatly, especially during the pandemic. I have found the MSAA Community to be extremely supportive and helpful.
Please be patient with yourself. Knowledge is power. Find out all you can about multiple sclerosis. Be kind to yourself, too. Blessings! 😇🙏🙂🤞
Give yourself a year to settle in. There's a lot going on, and yes it's normal to feel insane sometimes. I can't tell if it's grief, fatigue, or both. Probably both 🤷♀️ MS fatigue is not just feeling tired, it's end of your rope exhaustion 😵💫 Maybe break your activities into shorter chunks with some rest or nap in the afternoon.
Szs3eb there is so much information to take in when you get first diagnosed, so many half-answered questions and more. Be kind to yourself.
You will be fine. Many of us have found our stride in dealing with ms. You can still live a normal life if not even better than before. There are good DMTs nowadays that can significantly delay the progression of the disease.
Also, if you are really down, it's okay to ask your doctor to put you on an antidepressant so that you can continue to function. I was on Effexor prior to dx and it certainly helped me cope with the ds.
What you're feeling is completely normal...including feeling like you're going insane. It'll take some time to figure out your new "normal". As for the fatigue, you'll figure out how much you can do through trial and error, so you can rest before passing your fatigue limit and sleep for a week straight. (Been there...done that.) I hike a lot. Sometimes I can walk 2 miles before I need to rest and sometimes only a quarter mile before I have to rest. It depends on the terrain, the weather, and how my MS decides to beat me up that day. Whatever the trail app says that most people take to complete a trail, I just double that time for me. You'll have to figure out what works for you.
Hi, I was diagnosed last November with MS at 56. I have been dealing with foot drop and fatigue for several years. I have also had a hard time dealing with the diagnosis and the wondering if I am doing all the right things (I am on the Ocrevus infusions once every 6 months, just had my official full dosage after the first 2 1/2 dosages). My fatigue has gotten better at least I can get out of bed in the morning and go for a mile long walk (my foot drop prevents any running, I do a shuffle around the neighborhood using my walking sticks). I still get much more tired and know when I need rest but I haven't had that bone tired fatigue feeling where I can't even get out of bed in a couple of months so I feel like that is a victory. I am also having some battles with depression and I was on an antidepressant Zoloft but went off of it because I didn't feel like it was helping and I am loathe to be on more medications, but I have an appointment with the Mayo clinic in Jacksonville next week and plan on bringing it up so don't be afraid to ask you dr. about an antidepressant even if it is just until you stabilize and I do think that you will eventually stabilize with your diagnosis it just takes time. Hang in there and know that you aren't alone!!
Just please try to come to the realization that you’re life as you knew it is over. This is a hard pill to swallow but as soon as you do the easier it will be. Don’t know how many lesions /black holes or where they are but you have to shift from getting better to not getting worse. Depending on where you’re affected so goes your symptoms,. Emotional episodes are not uncommon but it sounds to me like you’re dealing with symptoms and the realization that you have the disease. Be thankful that you’re able to still do physically what you’re doing. I am so type A that it was 5 years pressure from my sister ( who has MS ) and unable to work that I got my mri. By that time I had about 75 lesions that had grouped together to become 3 black holes. We’re all different so my diagnosis was not as traumatic. I finally had an answer to what was wrong with me. Exercising your muscles is critical just try to go so much that you find yourself in a relapse or God forbid a PML. After my diagnosis came the relief then the inevitable ( pity party ) I think we all go through then live within your limitations. This is an opportunity to be happy inspire others and maintain a productive life! Don’t let it define you! For all intensive purposes I should be in a wheelchair but I’m not. MS is not a cookie cutter disease so other than the 3symptoms most all have , fatigue stress and short term memory loss you may develop other symptoms. I almost forgot, do not let it bother you when people who don’t understand MS make comments! It’s not their fault they don’t know. Diet movement and a good sleep schedule will be key. YOVE GOT THIS! I will keep you in my prayers knowing my relationship with my lord and savior has continued to bless me and will bless you as well! Have a great weekend!
A few people have mentioned getting your info from reputable sources and I couldn't agree more - there are so many websites around telling you how you can "fix", "heal" or "overcome" your MS by following this "MS diet" or that "MS diet" or using some other unproven "protocol". Get your head around the basic and proven scientific facts on MS and then you will have some chance of making a reasonably informed assessment of whether what you are being told has much validity or not (all of the sites will claim that they have scientific evidence, but basically it's cherry picked to prop up their claims and anything that doesn't do that is ignored.
One of the best things you can do for yourself to get some reputable and reliable info is to sign up for this free six week online course about MS. It was developed by the Tasmanian University and the Menzies Institute for Research, and based on student feedback it was the No 1 course in the world when first released in 2019. Now there's something like 40,000+ people around the world who have done it - including many people on this forum.
I was diagnosed at 29 in 1985. I think the overwhelming emotion I felt was fear. Fear of the unknown makes sense with a chronic disease like MS because you feel you have lost all control. I always remember my dreams and for about a year I had dreams where I was being chased and feared for my life. Huge variety of what was actually chasing me. haha! Then one night I dreamt a group of people with guns were coming for me and I was hiding in a house. Somehow I got a gun and I killed all of those people. I stopped having the dreams. I was starting to feel safer, less out of control. I was doing well and was able to exercise. I think perhaps you are depressed, which is a normal reaction, but is also a comorbidity of MS. If it continues for a long while, there is help for this. I truly hope you have a very slow progression of disease, like me, and that you reach your moment of knowing that you are okay and that there are things you can do for yourself.
Aww, You will be fine, I know I keep saying that but you still haven't recovered from the episode that got you diagnosed. If you had pneumonia, you would expect to feel like this. Give yourself time to heal and call your friend. That's what friends are for, and they don't mind. As others have said finding out you have MS is a hard thing to accept, and no it isn't like a switch, you suddenly don't become unable to do things. You still haven't recovered. A relapse takes time to get over. When I had double vision, I would go to bed at night thinking, in the morning I will be able to see, and I couldn't. It lasted 6 months.
Getting steroids at the start of a relapse does help you recover faster. Everyday you will feel stronger, but there will be days when you will feel like you have taken a couple steps backwards.
Speak to your DR, does he have a patient portal you can send a message? Antidepressants can help, personally valium helps me for those days when I am way too emotional. The issue with antidepressants is that they can take a while to work.
I understand. I used to have to take a nap every day! I started taking Alpha Lipoic Acid 600 MGS twice a day, No more naps. It's a vitamin the MS Society suggested.
I've gone through it, still do. One thing that helps me is learning to breathe deeply, and doing autogenic biofeedback. It does wonders, calms and centers you and gives you your focus back. We're with you, believe me.
totally different for everyone. i was dg. at 23 and ended up on ssdi at 27 mostly because of fatigue. it was/is way beyond just tired. but there are meds that might help you (did not help me) and every day is different.
It's a slow, hard journey. But after a year or two, I came to the realization that this is the 'new me'. The old me isn't dead, but he's changed. And I slowly learned to live as the new 'me'. I still have my good friends, and those that don't 'get' the new me are in the past now. I think I understand disability a little better, and I've lowered my expectations of others a lot. You'll make in your own time, and in your own way.
Hi, I am sorry you are going through this with MS. When I was diagnosed in 2019, I cried in the Doctor's office. I was so hurt. All of the questions came in my mind. Why me, what happen, I was just walking by self a few weeks ago and now I am riding in a Powe wheelchair. But I prayed about it and now me and MS has an understanding. Don't let MS get you down Be strong and accept it and keep moving. There will be hard days but let the good days outweigh the bad days. Hang in there. 👍
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