Hello family it's Fancy. After reading literally hundreds and hundreds post and talking to just as many family members in our chat room this post is long overdue. I was personally amazed at how many people I spoke to had swallowing issues just like me. It seems MS loves to attack the esophagus and cause swallowing issues in quite a few MS patients.
So I've compiled my three top symptoms. I hope you can all add to the list and or embellish upon what we've already done. Here goes my shortlist.
My top three symptoms that drive me the most nuts are:
1. My balance issues or lack thereof. Not only is this a nuisance and something that makes me extremely jealous of the average person just simply walking down the street without thinking about walking it can also be a very big health hazard as well.
2. Bladder and bowel incontinence. This issue has to be the most embarrassing of all issues. It plays upon your psyche and is the biggest issue I have with starting my depression, anxiety, and severe mood swings.
3. Esophageal spasms, choking, and complete airway blockage of the throat. For the longest time I thought this was my issue and my issue alone. Got so bad probably a couple times a month I would wind up on the floor choking so hard that I wasn't sure I wasn't about to pass out. I used to tell my husband don't worry if I pass out all relaxed and the choking will stop. Well once my doctor found out about my episodes she had a heart-to-heart with me and informed me that because it is an esophageal spasm the very real possibility is a spasm could not affected by my lack of Consciousness and I would choke to death. I have certain triggers that really set me off such as not chewing meet well enough, small particles like rice getting caught in my throat, or real strong spicy things like salad dressings or dips excetera. After the first focal swallow study failed miserably because I have no toking episodes whatsoever on their Bland Jello consistency food they gave me to swallow and watch I got signed up for a second study. When I came in for the second swallow study I brought from home things with me that I knew would set off my choking spasms. Well it worked and I started choking in front of them and they finally found out that I was having esophageal spasms. The doctor prescribed an old anti-seizure medicine for me to help tranq my esophagus and it has cut down on my choking episode good 80 to 85%. And those that I have don't seem nearly as severe or I can break through them in a matter of a minute or two instead of getting into real trouble.
I look forward to everyone's responses to this post. Please share with the rest of us what your worst symptoms are, what has work to help control them, and or go into more detail about symptoms you have that I've already listed and what works for you help control them . Remember knowledge is power so let's share the power with each other. Remember as always together we are stronger! Fancy.💪👍
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Fancy1959
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Morning Fancy, well I too suffer from balance problems, I have a feeling of falling backwards all the time. So I walk with my walker tending to lean forwards.
2 Next is my breathing, I cannot breathe deeply or get to the bottom of my lungs, my chest muscles seem to clamp my lungs. I have to bend forward to my knees to take a deep breath.
3 The shower, the water hurts, sometimes feels like electric shocks and it’s not a faulty shower.
4 Burning pain in my left arm and left side of my head, this is the WORST, symptom
5 like you but not as severe is food swallowing
6 loosing my voice, people actually tell me to clear my throat or ask do I have a cold.
The list is endless so I will give others a chance.
jimeka i am using a device for the past year to exercise and increase the strength of my breathing —it HAS helped. If interested let me know and I will write the info. 1 was $25 at the pulmonologist office, the other was given to me by the speech therapist.
Erash, when I had surgery on my liver they gave me the simple little long / breath rehab machine that you suck into and toll in as much air into the lungs that you can and it gives you a reading of how much are you bringing into your lungs. Simply doing this three to five times a day and a series of three or four times a piece really does increase your lung volume. It helped me after surgery to avoid the terrible pain that you often get when you cough due to surgery. Once I started using this I stop coughing and my pain lessened dramatically. It's stored away and I don't use it right now because I had don't have need of it but I've kept it because I think it's truly a mini-miracle when coming to your lung volume and how to improve it and monitor it. Thanks for letting Jimeka know about it. See we truly are stronger together because what one person doesn't think applies another person will and we help each other out tremendously by doing this.💕 Fancy.
Supremo, I never realized how big swallowing was as an MS issue until recently I spoke to several people that also had it. This post is showing how widespread it is. For everyone who has swallowing issues, if you've not yet done a swallow test make sure your doctor has you do one. Then when you go to do one take the food that triggers you're choking or difficulties when you swallow with you so the lab techs who are administrating the test can actually see your swallow issues in action. It's the only way they can truly help you and report to your doctor what you need. Just food for thought! LOL! Sorry about the pun but I couldn't resist. Fancy.
I have balance problems (only when I'm fatigued) but my "most" annoying symptom is my bladder. I have to run to get to the toilet in time or I will pee on myself. I wear pee pads or depends. It all depends on how I wake up feeling. 😕 I do have days that I don't need pee pads or my depends. ☺ It is what it is, atleast I'm walking now, I can work on the rest. 😊❤🌷
I to have bowel problems. I can't seem to poo on the regular. Sometimes it's like once a week but I'm losing weight and I eat well. I dunno but I have an appointment Monday at 10:30am with my Neuro which specializes in MS. Hopefully it's nothing bad. I don't get any stomach aches. I don't have any problems peeing (obviously). Lol 😕😊❤🌷
erash, I take Benefiber or the large box doors shelf brand of Benefiber twice a day in an 8-oz glass of fluid. It dissolves completely and it is tasteless so you can add it to anyting without having to deal with nasty taste or thick powders. Of course you need to make sure you get the time that is tasteless and dissolves completely which I know Benefiber does. My doctor warned me to stay the heck away from anything with Metamucil in it. My mom used to take it and she had the worst bowel issue problems I have ever seen and the doctor said it was caused from her taking it. Another idea I have is have you ever taken any magnesium? It is something you have you have to be careful with and figure out what dosage works well for you. It is the primary ingredient that they use when they clean you out for your colonoscopy. When my constipation isn't helped by my fiber,which is seldom because fiber does miracles for me, I go to my magnesium. It is also supposed to help you sleep better and regulate different bodily functions including your bowel movements. I sometimes just take it every other day if I become very constipated. It will certainly clean you out. Just a thought but as always check with your physician before you start any new medicine even supplements. Thinking about you and hoping your issues are helped by someone in this post. 💕Fancy.
Rosey, I think the incontinence issue causes more embarrassment and depression than anything else MS can throw at us. I know it is so for me. I hope the cure for this monster is right around the corner. Keep up the positive attitude and remember together we are stronger! Fancy.
I’m going to have to think about this...it WAS the trigeminal neuralgia because the pain was so severe, but since my gamma knife surgery a few yrs ago, that’s essentially better. Balance and motor fatigue are definitely a problem with my ability to participate in some of the activities I used to love. Cognitive deficits on my ability to continue in my chosen career. I have swallowing problems, but if I chew slowly and don’t multi task while eating, that’s controllable. Mostly I have adapted and love the opportunities that adaptation has brought me, and know I am truly lucky my MS isn’t as bad as it could be AND I am so fortunate for the magic of Ocrevus.
I look at it different erash. I think this post helps everyone to realize they're not alone with dealing with their various MS symptoms. I know it gets so heavy and we get so bogged down with our specific symptoms we think our MS is the worst in the world, at least sometimes I do. But seeing what everyone else is dealing with I truly feel blessed that regardless of how many issues I have I am still able to continue to walk with assistance and function by myself. It could be so much worse. I'm truly blessed not to have any pain associated with my MS. That is why I think this post is essential to remind each and everyone of us we are not alone on this journey and we were all walking parallel paths. Keep your chin up and remember together we are stronger. Smile at the world in this world will smile back at you!😊🤗💕Fancy😁😉💕
1. Fatigue that never ends some days are worse than others.
2. Short term and working memory issues. Often have trouble remembering what I did just a few seconds ago. I have to take notes for everything. When I leave my truck in the parking lot I often go back 3 or 4 times just to make sure I remembered to lock it.
3. Chocking sensation that started back in November. I don't have issues swallowing at least not yet. Just feels like someone has their hand around my throat and is squeezing. Makes it hard to talk and sometimes hard to get air in. Docs already ran some tests and haven't found anything blocking my throat to cause the chocking sensation so it's being attributed to MS.
4. Occasional issues with vertigo it always starts at the most inconvenient times.
It truly is amazing how similar some of our symptoms are. I fight the fatigue and I sleep a lot and I had this discussion with my husband last night that the reason I do sleep quite often is due to this disease and the severe fatigue that is a part of it. Plus the fact that we've had so much rain lately I think we've had two sunny days in the last two -2 and 1/2 Weeks so do to the Drury rainy days it's just so nice to curl up in the recliner with the blanket and fall to sleep. I know these days lead to my depression getting worse and I have to fight it to keep it from trying to consume me but staying on this chat room truly helps me! I don't think everyone realizes every response you make how much it helped someone else, like me,. I would be lost without all of you! You make my MS ever so much more manageable and I hope I help with yours ever-so-slightly! 💕Fancy!
I love being supportive by everyone and hope I can reciprocate. Normally I have Wednesdays off work but a coworker's husband is having a hip replacement so I'm off today instead. I got up at 7, took my son to school. Came home and ate my teeny breakfast then went back to bed. I slept with my kitties (one under the covers against my stomach) and didn't wake until 11:30. It was wonderful. It is now 3:30 in the afternoon and I wish I was still in bed.
It's hard to say which is the worst. I guess it's whatever I'm dealing with at the moment. One of the most frustrating is the cog fog. It manifests itself in really irritating ways.
Another of the worst, but, paradoxically, also the best side of symptoms, is the coming-and-going-ness of symptoms and never knowing when they'll hit or long they'll stay.
I agree with both of you about the symptoms coming and going is extremely hard to deal with. I guess I've had so many symptoms over the past years that I don't usually just Governor symptoms at this point but old symptoms can pop up when you least expect them and make life difficult. As if MS in your life isn't difficult enough! Fancy.
I feel like cog fog, exhausting fatigue, mood change and inability to communicate are a package deal for me, but it’s weird to list because I’m usually on top of managing it.
Vision loss and poor eye reflexes get me much more often.
The legs have their own agenda, they do all sorts of things, and cause some mischief daily.
Kďali, I would never have guessed you had trouble with your communication at all. You are so well organized and so clear when you post you are reading this monster One symptom at a time. You are simply amazing, young mothers generally are however! Fight on MS Warrior fight on! Fancy💕👍🤗💪
Oh yes ma’am! Thank you so much 😍 Hubs and I make a game out of it and most of the time and we are able to work out what I’m trying to say or thinking. It’s a rare day when it’s so frustrating that I’m headed towards a meltdown by the end of the day. I do hate it. However, I was blessed to have the experience of working with aphasic people, and head traumas, etc...getting their frustration level down (usually by cracking jokes) and encouraging naps or speaking breaks was one of my daily interventions for them and I feel it made a huge difference. I just have to remember to nurse myself as well 🤗
Falalalala, I think many of your experience our balance problems because we drag our feet or we don't pick them up like we should hence foot drop. It's something we simply take for granted and we don't attribute our poor valence to us not picking our feet up and placing them like we used to. Thanks for reminding us all that sometimes there's more to our balance issues then simply swaying on our feet.💕 Fancy.
Looking at the list of items people are providing,...well, just like when I go to my neurologist, I ask if I can only check those items I don't have, to save me a whole lot of work. (my doc has a very long list on top of that). But, I don't have your Esophageal spasms, choking, and complete airway blockage of the throat, and I am really thankful for that! So Sorry. Glad something's helping? I did say help.
Okay, I took up cooking since I came out of "my coma" a while after retiring, and although I 'm probably terrible at it, because....
1. I need to spend so much time digesting the recipes, to come up with what I want, even though I file everything like a lunatic, the process is hard. Yeah, I could meal plan for 1 meal at a time, a restaurant full, never. I could create a symphony of projects at work, and have them all come out perfect, a meal these days????
2. then have to use many, many of those memory aid things, called post-it's? to draw out a path to completing the meal,
3. and my sense of smell and taste are nearly gone, so I will tend to really over season everything, and I love garlic and onion, and....and....
4. And doing it from memory??? Nope, still have to look up the simple stuff, like all of it, from conversions to methods, temperatures, equipment....
At least I have an understanding wife, who enjoys being catered to with my cooking. I get up first, to make breakfast in time. Pack a lunch. And try and provide healthy delicious meals. So, if other than it is a full time job trying, and since I can only imagine much of the smell and taste....I do okay?
Yes, nearly everything from M.S. I have is annoying. But, I take it all with a grain of salt? And drown it in coffee and caffeine pills to get me through the task. Luckily a FEW of my "M.S. gifts" have gotten BETTER. And yes I am saying better. Like that which is helping you, FEW and BETTER are the more precise terms.
So, most annoying? ??? ??? Don't think I can answer that! There's always so much going on, and none are really anything but really, really annoying. Maybe it's when they all hit at precisely the same time, which seems to be??? Always!
Mark great attitude. It's so important for people in the chat room to understand that they can get through it and they can adapt to it much as you have. The human spirit is nothing if not adaptable and sometimes we forget to open a window when the door is slammed in our face by MS. Glad you are in the chat room and thank you for the uplifting post. Each and every one of us makes a difference. Together we are stronger! Fancy.💕💪🤗
Allen, you did a very precise summation about why MS is annoying! And you hit the nail right on the head smack dab in the middle! I love your post and I agree with your precise reply. I think most of us in the chat room can also agree and understand your reply. Thanks for being part of the chat room. It's good to hear from you again. Take care and remember together we are stronger! Fancy.💪💕👍🤗
Hey I can find myself having all the three symptoms that you've mentioned Fancy1959 .😝🤔🤐😊
I also agree with you. Never take balance and walking for granted. When MS first manifested itself upon me it actually paralyzed me. So every single day (even if it's in my own house), I walk and keep my legs moving. Every single morning before I get out of bed I make sure my brain sends signals to my legs. ❤🌷
Sue, I totally agree. What makes me get so mad at myself is I turn Green With Envy and become so jealous of watching people walk down the street is it if they have not a care in the world and walking without thinking about it! I feel Petty about being so jealous but I want to walk up to them and tell them never to take anything for granted in to enjoy every single day they are self-sufficient and "normal" feeling. They don't know how quickly their life can change. Fancy.💕🤗😥😯
I'm saying ditto too! Those are my top 3 and they all are interrelated. The more fatigue I feel, the more my balance is off and the more my vision is impaired. The more my vision is impaired, the more fatigue I feel and the more my balance goes wonky.
I get those weird throat spasms, but fortunately only a few times a year. All it takes is a piece of food hitting my throat in a certain spot and I have a spasm and start gasping and can’t breathe. Looks like I’m choking. One neuro shrugged it off, said it only happens in advanced stages of MS. I forgot to tell my other neuro.
Waking up in pain , all over my body. It goes away after I get moving around a bit and pull my pants up after I go to the bathroom . It usually take 4 or more tries....I'm having difficulty standing for any amount of time. elle61
Nobody else ever talks about anger. I feel a sudden rush of rage over minor stresses. I am angry that I have MS and angry that I cannot figure out how to “make the best of the life that I have.” I am angry at God often, even though I have a deep faith. (He knows how hard my life is and He forgives me.)
I often feel like I’m in “fight or flight” mode, for no apparent reason. It is sad that I cannot remember how to feel happy or at peace.
What ever happened to the “remyelination” treatments that they used to say were just around the corner?
Okay looking at everyone's list you all are so awesome in the list is getting so complete it's hard not to agree with everything everyone said. Firstly I've come up with two other sitting here replying that are driving me nuts today so much like erash, my most annoying symptoms are the one bothering me at the present moment. My specificity every single morning drives me nuts. I go so stiff throughout the entire body and torso and legs that sometimes I can slide right out of the chair without being able to stop myself. It really stinks. Over the past several infusions I've had with ocrevus this seems to have been controlled for several months much much better. This past infusion in early January though had no effect on my specificity at all.😲😤 I asked what's up with that? Who knows? Secondly, I've been in athletic well coordinated person my entire life, until MS robbeď me of it. It drives me nuts trying to take something as simple as my straw and getting my hands to put the straw into the hole into the cup so I can drink my water. My hand simply do not respond to what my mind is telling them to do quite often. I truly hate it. Enough about me I'm going to go back and work on your face because they're awesome and I love each and every one of them! Fancy.
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