I read an interesting article recently posted by a gentleman with MS (on another MS site I am on) called multiplesclerosis.net Click here to read article
. I felt like I had written this article myself it was so spot on with how I am almost every day. Here's my response I posted to the article: I completely understand. I was diagnosed in mid July of 2017, but my neurologist says based on the amount of lesions revealed via my brain MRI & the amount of 'o' bands in revealed in my spinal tap results, he believes I've actually had MS for quite some time. I am on Tecfidera which I take twice a day. I definately get the daily fatigue, all day but especially as the day drags on. I get the heavy legs, I wake up almost every morning with jarring hand & arm pain/numbness that sometimes will reoccur throughout the day. I always have a headache of some sort. Always have dry mouth it seems. I also get occasional all over body aches and pain. I also have cervical spinal stenosis so that makes pain in my neck and back a daily occurrence all on its own. I even get very short moments of blurred or double vision, thankfully they are quite brief. I struggle with speech too, especially if I am in a long winded, aggravated or emotional conversation - I may forget a word or slur my speech, that's fairly common for me. Cognitively I don't feel very sharp, I feel slower then I should be and it's frustrating for sure. Exhausted physically and mentally. Every day is a winding road and for those of us with MS, it's a long haul.
I wanted to get others on here's feedback on the article, such as if you can relate to his struggles and how you struggle yourself in the same or different ways.
I too am on Tecfidera.
In my course of gaining knowledge i read about the PML virus. I experience 7 of the 8 symptoms/signs of onset.
Today i called my neurologist to make sure i'm up to date on my bloodwork...i honestly am not certain i am. Waiting on his PA to call me back to discuss...hopefully that occurs today. My last two MRI's show Tecfidera is "working" to stabilize my MS, but these particular symptoms seem to pop up and make my disability/limitations aggrevated concerning these particular symptoms of PML onset that i am experiencing in varying degrees, but bottom line is i am experiencing them.
This is just food for thought for me at this point and i'm being proactive and assertive concerning my healthcare. I've been on Tecfidera for almost one year, it's my first DMT and although i tolerate it well and MRI's say it's working these symptoms are such that i have concerns.
Thx for your post today!!
This article is pretty accurate to how I feel. I may be 22 but my MS has been aroud for over a decade and progressed further than most my age with MS. I see MS close up too working at a rehab hospital and what it can do, seeing 50 year olds only have slight movement of their left arm left me crying in the bathroom on a night shift a few times. Its strikes with me as well while i consider starting Lemtrada, which has a side effects list longer than most, but when it works it works well. So i choose maybe getting cancer or a blood disorder and being miserable for a few years but then feeling great after, or do i choose feeling mediocre and risking the chance to become more disabled and "trapped" in my own body- it could happen but it could also not and the fear of the unknown is I think the worst with this disease. It could or it couldnt, and you dont really know..I think most with MS can relate to this article.
Whats the name of the article? I am looking now. Thanks so much!!!
I read this article and when I was bad for those 11 months that a doctor was telling me everything was fine but my body was saying no its not. I remember feeling trapped unable to walk. Slurred speech. Not so much pain maybe pain to my pride. I woke up and took a shower then would go back to sleep because the shower was exhausting. I remember those days I just wanted to scream jump out of my head. I wanted to die. I was lucky though. Something finally went my way I worked hard new medication, PT, OT, and other medications and now well I work full time. I am happy. I don't find those things as draining although they still can be. I have a lot of hope with the new medical advances everyday. I still do struggle don't get me wrong. I see a psychologist not as regularly as I used too. I still feel very sharp. I can understand the cement feeling or the messages not getting to my body part as fast as I want it too. Like the body is betraying you. How dare my body do that? I see people around me who act like life is so tough and I just wish for one day they would be able to feel what I feel everyday. How about waking up from 8 hours of sleep still feeling exhausted. How about working around the house for five minutes then need a nap. Or feeling like a shut in during the summer because if you feel that heat you will be exhausted. How about when I'm sick and the pain in my knees. Why do you have pain in your knees with MS. I don't know I just know it feels like there being hit with a hammer. I mean its those little things. Walking a long way to work and having an accident in your pants. How embarrassing because you can't hold it like you used too. I get the struggles although again I am so lucky. I work full time because if I were home all day I would mope around feeling sorry for myself and thats not how I want to spend my life. So I wake up every morning and I come into work. I never call off because I feel bad almost everyday. The thing that will make me feel better is coming to work helping people. So what if I may limp or stumble at times. I am so lucky though I can work. I can live a semi normal life because I know some people can't. Anyway sorry for going on. I'm so sorry you all have to deal with everything you do everyday. Keep going and keep the hope!
Hang in there! You are right, you can still work, that is great. I have PPMS and can no longer work or drive, making my day very long and taking away my independance! I just can't tell you how hard this is on me being cut off from the world. Not to mention what a burden I feel I am on my husband because I can no longer drive. Living with M.S. is HARD and some of the nureologist think there is no pain involved but we both know that is so UNTRUE! When you can't count on dr's to help you or believe in what you are saying, well that is so bad. It is time for you to find one who believes in you!
I know your frustration, if only the people around you could walk a mile in our shoes, they too woud understand how very hard our lives can be! You just keep working as long as you can because helping others is what keeps you going, don't give that up until you have too, okay?
I really believe there is a cure coming soon, maybe not in my lifetime, I'm old, ha, ha, but by your post, you still sound young, so maybe it will come in your lifetime for sure! Just keep doing what you can for as long as you can and forget about the others. They will never understand all that you go through, so you just keep going! Put a big smile on your face and you keep going as long as you can!
Wow, I feel like I wrote your post! I also read the inital article written by the gentleman and for the first time in years, I don't feel alone! That dosen't make living with M.S. any better but I understand what you are going thru. I was diagnosed with PPMS in 2013. At that time, I was only using a cane to get aound. I remember the nurse giving me all these pamplets on the different aspects of M.S.. At the time, I remember thinking I would never have any use for them, boy was I wrong! I hadn't had any of the meds. for M.S. and was told there was nothing for me to take because my progresson had gotten so bad. I had all the tests by then and my husband and I figured I had M.S. for about 20 years because that is when my health started taking a turn for the worst. I remember Gary driving me to all the different dr's. appointments, we didn't understand what was happening to me! I have had very heavy legs for over 20 years. I too have severe pain in my wrist, hands and especally my fingers. it doesn't help that I have had sugery on both of them. I also have a stabbing pain in by back. I feel fatigue everyday, some days are worst then others. I can wake up, have a bowl of ceral and then take a shower, only to go back to bed because I am so tired. I have bad doubel vision and blurrey vision for some time now. It is a big problem not being to see clearly. I'm on my second pair of glasses with prisims, I finally can see but for how long before I will need a higher prisim and let me tell you, glasses are not cheap! I also have a headache EVERYDAY. A mystery to my dr. And I totally understand your not feeling very cognitively sharp. I know for a fact that my learning skills are hardly there. I say the wrong word often and have a really hard time learning new things. I know I used to be much brighter then I am now. Needless to say I am scarred! How bad am I going to get? I've had my second infusion of Ocrevus, the first drug of its kind made for people with PPMS. So far, it seems to help the people who are younger and have Realpsing M.S. the most but I'm just hoping it stops my progresson. Now, I need a walker to get around and my whole life has changed! M.S. seems to have taken over my body and my mind, all I can do now is pray that I don't get any worse! I've had to learn to use my left hand because my right arm is only good for looks now. I have a severe tremor in my right arm, keeping me from writting, eating, cutting food, etc. Putting a knife in my right hand is like taking your own life in yor hands, ha, ha! It was very hard to learn how to print with my left hand but I did. Thanks for your post and sharing the other M.S. web site. I hope you can get some relief. You are so right, everyday is a winding road for thoes of us with M.S. but I really think there will be a cure, maybe not in my lifetime (i'm 64) by surley sometime in the future so, you hang in there and thank you!