How's your MS day going?
Let's talk symptoms today? What is your most annoying MS symptom? And how do you deal with it?
🤗💕
J🌠
What's wrong? : How's your MS day going... - My MSAA Community
What's wrong?
Jesmcd2CommunityAmbassador
Written by
Jesmcd2
CommunityAmbassador
To view profiles and participate in discussions please or .
66 Replies
•
My worst symptoms are as follows (from worst listed first to lessor): Bone-crushing fatigue, cognitive dysfunction, bladder issues, balance.
Although I've had a definite MS dx for 25 years (22 years on Avonex), I must say it's been a steady slow decline over the years. But, I know how "lucky" I am to have stared on a tx 6 months before my 29th birthday.
To "all those MS vets", remember when treatments were not available? Then, Betaseron lottery, CRABS, first oral txs, then infusions, etc. Perhaps NOW is the best time to be fighting this MonSter! 
I hate that fatigue! I'm fighting it today. Modnifnil isn't touching it. So just chilling today. I do remember sleeping 😴 6 months tho. Do you take anything for your bladder?
I'm glad the Anovex is working out for you!😊 And you are right about having so many DMTS now. Just in the 4 1/2 yrs for me we have had ? 5 new ones? 😁
Now if they just find a cure!!! 😉🤗💕🌠
Today?!?!?!?!? My vibrating flipper which passes for a right hand has damed me to Password Hell! I foolishly bought a brand new computer and a tablet because my partner refused to accept the fact our wireless modum desperately needed to be upgraded so the money we're shoveling into our phone company for internet actually meant we got internet! My partner said it was the computer I was using, instead. So get a new computer. Okay, done! But if that didn't solve the problem, I got a tablet so I could connect using my smart phone's carrier. Done. But all the websites I needed the internet for, requires paswords! PASSWORDS!!! Yeah, Google said those were all stored with Chrome. Uh huh. Nope. And while I have a fantastic memory, I've just forgotten where I put it. So I started doing the unforgiveable--writing all my passwords down. Okay. But the right vibrating flipper which was part of a pair that once typed 120 wpm, now can't even type a few passwords I wrote down. AAARRRRRRRRRRGH!!!!!!!!
I'm really trying not to 😂 but I am 🤣🤣with you CrazyCatWom because I'm the same way!! I have gotten to the point of writing my passwords down. Mine and a few others, that I keep track for.
I don't know if this will work or not, but I read somewhere, that if you take some card board and wrap it n tin foil. Put it behind your modem. It will give you a better range? I do not know if it works or not. Something about reflecting off it.? If you try it, let me know.😉😂🤗💕🌠🤗
The card board with foil wrapped around it won't work quite that way. The Wi-Fi signal works in a 360° vertical direction. There are several websites that have directions on how to create a booster for your Wi-Fi antennas using Pringles cans. Some of the instructions are fairly easy to follow and some not so much.
• in reply toCrazyCatWom
I've finally amassed so many passwords that I caved in and wrote them down. And now I worry that someone will break into the house and steal - not my jewelry, not my electronics, not my deceased dad's old pocket watch - but my little notebook with all my passwords in it. The real keys to the kingdom! I probably need a safe to put my passwords in, but then I'd have to remember the combination to open the safe, so I'd have to write it down, and then I'm back where I started. 😂🤣😂
😭😂😭 not to steal anything but your passwords! 🙈🤣 I love it! It I totally get it! Hidden now have to lock my notebook up🙈😂🤗💕🌠
• in reply toJesmcd2
😂😂😂
Hackers have already stolen all our passwords. Passwords only keep account creators out of their own accounts, not theives.
I keep my passwords in my phones contacts. So it is not the real password but a variation. For example let's say my base password is dog doglover but some sites make you use uppercase, lower case, number and special character (this drives me crazy every site having different requirements and then some make you update every so often!) I know my base password (doglover) and replace it with the word password in my contacts so no one else can use the info. Then I edit based on requirement of the site; Password1* or Password1, etc. Then if I have to change my password I just go up a number to Password2 or Password2* by using this same pattern for all sites I can usually guess my password by the third try or refer to my contacts in my phone to find it
I hope you are connecting now!
Hi Jesmcd2, I am feeling ok today. I am dealing with the same issues today and everyday stiffness, tightness and balance. I went to see my neuro and he said that I have unsteady gait. Now I see where the balancing problem comes from. I am using a cane now but he said I need to get a rollator and I said I need my insurance to pay for that one.
Did your Dr write you a script for one Cutefreckles72 ?
I'm sorry about the stiffness. It makes it even harder to get around. 😕 Plz plz becareful with your balance! Falling is not ok! 🤗💕🌠
Yes he did. I checked with CVS and Walgreens but they told me my insurance would have to confirm the script before I could get a rollator. So I am going to see if my insurance company can recommend a "non name brand pharmacy supply store" for me to use .
You might want to check with a medical supply place 1st Cutefreckles72 they would have a better selection? I would think anyway. 😊🤗💕🌠
At this time, I am going to wait until next year. Since we are changing insurance, I am going to see if BCBS will pay for one. BCBS use CVS so they may pay for it. If not, I will go to a medical supply store.
Cutefreckles72 MSAA has a program that might be able to help, check it out.😊 mymsaa.org/msaa-help/assist...
Let us know!🤗💕🌠
Thank you. I thought about that as well. I will check it out.
It doesn't hurt to check it out Cutefreckles72 !!! 🤗💕🌠
• in reply toCutefreckles72
I've only been using a cane up to now but there are some days where I'm still in danger of falling even with the cane. I almost asked my doctor to write a prescription for a rollator when I saw him a couple of weeks ago and see if my insurance company will cover it. But I decided to hold off. I have a tendency to live in denial as far as I can stretch it - right to the edge of the cliff. I really should stop doing that!
pamgarner• in reply to
I am on medicare and if you have a prescription a rollator is next to free,and when I ask my doctor for one,he responded"I am so proud of you for asking because there are so many people that would not use it because it's embarassing"Not me, anything to keep moving.I have a rollator, 6 canes and a trans port chair,I am going to go no matter what!
And that's where my problem comes in. I don't have Medicare or Medicaid. So at this point in time, I am depending on my husband's insurance to pay for equipment now. Hopefully next year, I will be receiving my supplemental insurance benefits to help pay additional stuff.
I do believe if you purchase that at a medical supply place,they will file on your insurance with a prescription,good luck!
Cutefreckles72• in reply to
Next year my husband insurance is changing to BCBS and they use CVS so I think I will wait to see if BCBS will pay for it. I just need something steady to walk with.
I lucked out. So far I "only" use a cane now and then. When my mother-in-law died and her mom died, between the 2 of them they had all kinds of mobility devices. I picked the best of the lot and the family let me, knowing that I would be first in line to need them! Two different types of bath chairs, my cane, wheelchair, rollator, transfer board... Trying to think ahead and plan for the worst. Hopefully I won't need them but if I do, I have them!
Fabulous! 🤰
MS is my worst symptom 🤣🤣
When fatigue is high, then my symptoms are all over the place. Keto has been a reliable solution.
• in reply tokdali
Do you have a limit you keep daily carbs under (like 30 grams)? Just curious how you manage your keto. Do you use the sticks to test?
kdali• in reply to
When I started I did the 20 net carbs thing and 2 weeks later I noticed I was fine at 4pm and had been fine all day 🤷♀️🙌🏻👏 This was earth shattering because it was a travel day with an infant and I usually napped at 4pm. I don’t need naps anymore.
I used pee strips then to make sure I was good, but after you start using ketones for fuel, you won’t have positive strips. After noticing how clear I was and how much energy I had, I bought a keto mojo and did a food log to see how I reacted to everything and different carb types and levels. I did dirty keto too, so I had the fake sugar sweets and all that, and naturally ate one or two meals per day.
I tried everything under the sun that was keto, from vegan to carnivore, and learned what kicked me out quickly and what I liked a lot. I drank exogenous ketones if I ever woke up too low to zoom zoom, if I wanted to have a junky meal, or during my recovery from a relapse and needed higher numbers to have the same energy and mental clarity as I normally would (the zoom! 🤣).
Some people do well much higher or lower than me, it all depends on how much brain damage is there and the symptoms. There are very few of us kind enough to post our experience for the masses, so if you come to the dark side, please let the universe know what worked for you. I have learned some really hot tips from random others with MS and epilepsy in FB groups...the drinking ketones idea to cheat my crappy morning number was one of them.
It’s not forever checking either. I only check my blood now if I am fasting because I can usually guess by how I feel what the number is. Feb will be two years for me!
• in reply tokdali
I did the 3rd level of the Wahls diet for 7 months and stayed borderline keto (per my pee stick). I ate no grains, no potatoes, sugar etc., but did eat fruit, only berries though. I had a hard time staying keto and getting in enough colored fruits / veggies (3 cups a day) because I react to nightshades, like tomatoes, which have less carbs than some other color vegs, such as beets, carrots, sweet potatoes. You also have to eat 3 cups a day of sulphur vegs and 3 cups a day of green leafy vegs, and all of those have some carbs which add up over the day. I did have more energy, walked better, better brain function when I was on it. But I worked full time and all those vegs are a lot of work to prepare. I also lived in an area where vegs are shipped from far away, so by the time I got them home I had to cook them within a day or 2 before they went bad, thus I had to go to the store more often to have fresh vegs on hand. It became more than I could keep up with, but I did become a believer. I'm looking for something easier to follow. I'm not working full time now but am also not living where I have a full kitchen available to me without climbing stairs. I might go back to Wahls later.
kdali• in reply to
I use to eat that much when I did OMS. Stir fries and rice bowls galore. I worried about eating rainbows and adding foods high in this or that. I don’t spend much time food prepping and shopping, or thinking about food anymore.
• in reply tokdali
I'm not someone who enjoys cooking, preparing food, or generally spending time in the kitchen. Twenty grams of carbs daily is really low. I ate nothing but meat, lower carb veggies and berries (the lowest carb fruit), and not much of it. You couldn't eat unlimited amounts of the colors because that's where most of your carbs were. And I struggled to stay under 50 grams a day. But the point wasn't to stay in ketosis. It was getting the nutrients and micronutrients from foods that gave your body what it needed to heal. I just found it high maintenance unless you have someone that can do the shopping and food prep for you. I did improve on it to a point but couldn't maintain it. It's also expensive. I had the money as long as I was working. I just didn't have the energy after my work day. I met Dr. Wahls in 2017 and I love her. She has worked so hard to share this with people and get the info out there, because she recovered after figuring this diet out through her own research and trial and error. She's an internal medicine doctor and also teaches at the University of Iowa. She's one of those traditionally trained doctors that did everything her specialists told her to do, took the DMTs, was still going downhill so started researching out of desperation and healed her symptoms with nutrition and exercise and neuromuscular electrical stimulation. She doesn't say she's cured because if she were to start eating the typical junk American diet again she says her symptoms would likely return. I know there are people who have healed using other diets such as Ann Boroch and others. I say, whatever works!
kdali• in reply to
It is high maintenance, but if it is doable and makes you feel better, then you know you’ve found your thing. I have a farm delivery service that allows you to choose your produce every week and add on whatever meat and dairy. Their items are usually very fresh, and if we get the rare spoiled berry, then I get credited after I report it. This may be an option where you live also. They have zoodles and some prepped veggies now too. I always relied on purple cabbage because it was cheap, lasted forever, I grew up with a lot of cabbage dishes, and it ticked lots of the good boxes. There may even be some Wahls on a budget or Wahls for busy people types of YouTube videos you could get helpful tips from. I hate to hear you found something beneficial, but now it’s not doable 😞
• in reply tokdali
There's a lot you can't eat on the Wahls diet. No gluten, dairy, eggs, legumes, grains, absolutely no prepared foods as they usually have preservatives or MSG or who knows what. You can have nuts but I'm sensitive to them so can't have much. I'm allergic to mushrooms so can't have that, I'm sensitive to nightshades which includes tomatoes, peppers, eggplant, potatoes (sweet potatoes aren't nightshades). I ate only organic non-gmo berries and veggies, 100% grassfed meat, pastured chicken (if I could find it). It's pretty austere and very expensive, but if you have time and energy to cook and be creative it can be satisfying. Also, try traveling and staying on that. Impossible, but I'd just do the best I could when I had to travel. I need to find something simpler. I may just go straight keto and see how that effects me.
kdali• in reply to
If you can do and enjoy dairy and eggs, keto can be cheap and very satisfying. I’ve just discovered duck eggs 🥰 I’ve done great with cycling out weekly and hop back into ketosis easily, but it took some patience with having IBS. If you take the fat plunge, the keto groups online can be great resources for meal ideas, recipes, and advice!
• in reply tokdali
Before I gave up eggs I had discovered duck eggs. I loved them. I still buy them for my husband when they're available. It's amazing the difference in the shells - you practically have to hit a duck egg with a hammer 🤣. But dairy (because of the protein casein) and eggs are off my diet now. I had the blood test for allergies and it showed I'm allergic to eggs and mushrooms. I'm always conscious of my diet and how I can provoke less inflammation. For oils I only use coconut oil if I'm cooking with it because it can withstand a higher temp without oxidizing, or extra virgin olive oil if it's something I'm not heating, like salad dressing. Sometimes use avocado oil too. When I was young, before MS presented itself in my life, I would do the Atkins diet sometimes and I always felt great on it - lots of energy. It was hard starting it and giving up the carbs, but once they were out of your system the craving would go away. Anyway - my diet is always a work in progress these days.
kdali• in reply to
Yes, there’s a cracking learning curve for sure! 🤣 I had some scrambled with black truffle salt and it was divine! You could try A2 casein dairy if you wanted it, we buy mostly that type for V (gets delivered from the farm), usually goat or cow. I amazes me that people still fry in fragile oils 🤷♀️🤮🤦♀️
• in reply tokdali
I still generally follow Dr. Wahls, though I'm not eating the entire 9 cups of veggies a day and eat a little gluten free grain from time to time, which is allowed on level 2 of her diet. Goat dairy products are also not allowed. There are other proteins in dairy, but casein is the biggest. I'd still be hesitant to jump back into any kind of dairy. I've lived without it for almost 10 years and don't miss it, except extra sharp cheddar cheese. But not bad enough to go on an extensive hunt for an approved cow.😂 If it becomes an item that is sold at a grocer near me, I'll ask Dr. Wahls about it.
What does it mean to drink ketones?
I want to improve my diet, but aren’t really sure where to start. I eat an OK diet with a good number of fruits and vegetables. But I’m sure I have too many carbohydrates and fat with ice cream and goldfish crackers as snacks (for example)
Exogenous ketones are sold in a powder form, and sometimes in combination with MCT oil. I would never suggest anyone trying it unless they were really good with a keto plan and didn’t mind setting money on fire, because they are not cheap. They also taste terrible.
You don’t need rules or books or anything to make improvements. You could finish dinner by 6pm during the week. Cut snacking. Reduce things with sugar or that come in boxes. Then see what’s easy. If it’s no big deal to limit your eating window as long as you can eat what you like when you do eat, then maybe you were meant to fast one day per week. If you would rather die than skip a meal, then maybe a zero processed foods approach would suit you better. Baby steps count as moving forward.
Most annoying is my inability to move like a ballerina. No, but really, I find myself sitting on the bed on my laptop (like what I'm doing right now) putting off getting up and doing a task, like organizing my pile of supplements that I take (I have my morning supplements and my evening supplements) to make it easier for me to take them, because right now I don't take them half the time because they're in a pile in a place that's not real accessible. But I keep putting it off because moving is difficult, like walking and moving through mud. So I take the path of least resistance. However, no mud, no gain. I really do need to get up and do this. Okay, you talked me into it. (Me having a conversation with myself instigated by your question. Thanks Jes!)
Your welcome? I think? Hidden I hear you tho! I don't want to do anything either. Blah. 🤗💕🌠 Great conversation Kerry! 🤣
my ms was fine today.
my worse symptoms is spasms, drop foot, back pain, cognitive, balance.
deal with day by day
I have had quite the adventure the last couple of days,me hubby has a difibulator in his chest for his heart.saturday he was in a fishing tournament and it went off and shocked him 9 times.he was taken to the hospital by ambulance and they tried for hours to get his atrill fibulation under control.they finally got it under control and sent him home 2 days later but he still has to go back and get a heart catherization.he already has 5 stints,they think they might be blocked.sooooo--- back to ms,there is a saying"you are like a tea bag and you never know strong you are until you are put in boiling water"I managed to carry lots of things on my transport chair,slept in a chair for 2 days,could drive back and forth,so I NEVER gave MS a thought...so compared to what it could have been,I am great
Thank goodness your husband is alright!! And wish him the very best for his surgery pamgarner ! It's amazing how deep we dig when we need to!
How are you? Have you taken a breath yet? 🤗💕🌠
I am good thanks,it is amazing to me that you can do what you HAVE to do.Just trying to appreciate him every second.we need to remember that every day with our loved ones.
Hi honey I’m ok but my most annoying symptom is my stupid-a.s balance lol, I go swimming at my gym when I can and try and do my exercises. Hope ur ok with ur neck problems, much love me xxxxxxx ❤️❤️❤️💕❤️💞💞💕💕❤️❤️💕❤️ Also my bladder problems and which are being sorted out- medication and single-use catheters which I’m trying to get used to lol xxxxxx
Hi hun! Gotta love balance issues! Does the swimming help with that? Neck is doing better! Thx! Good deal on the bladder too!. 🤗💕🌠
Good morning, Jes! Like most of us, my symptoms change by the day, or the hour, but we keep on going! It sure beats the alternative. Fatigue, balance or no balance, I guess, pain in my back and right leg, but only when I walk! Constantly overactive bladder and bowels keep me trim! I'm sure I'm forgetting some, but something new will develop and distract me! Have a wonderful day! Linda
Dizziness. If it gets bad, I take a nap. It's like a magical reset...until it comes on again.
Your Dr can't do anything for that OKgal ? Although naps are nice🤣🤗💕🌠
He did, right after diagnosis. I agreed to try diazepam and it worked to get it tolerable. We've had discussions about vestibular therapy, where he states it's wonderful for conditions with the ear. He's never seen it work with CNS damage though.
A few days ago I would have said my headache from the concussion I got when I fell! But PT helps and I do my exercises daily so that is getting better. Yeah!
My worst is my piss-poor memory. Tomorrow is day 1 of my neuropsyche testing. We will see how cloudy my brain is.
Passed couple of weeks now it's been the bone crushing fatigue and vertigo to go with it. Brain fog and memory issues follow close behind. I worked 4 hours yesterday and couldn't take it anymore so I went home. Didn't go to work at all today. Didn't wake up until almost 1pm. I've got my next appointment with the neurologist 3 December and will talk to him about disability retirement. The fatigue is killing me.
Is this new? Peruzzot ? 🤔 Relapse? 🤗💕🌠
I haven't had the vertigo this bad in years. Last time it lasted about 2 months. I had 3 MRIs done already and have an appointment with the neurologist on 3 December. Right now just waiting for the results of blood work and MRIs. But the doc thinks it might be a relapse. I'm back at work today but not sure how long I'll stay.
Just be careful, Peruzzot I am sending you gentle vHugs, and my goofy vSmile 
🤗 Thank you
Sounds silly, but my feet hurt (tight, burning, squeezing, pressure, numb, weird sensations) almost all the time and it can overtake my awareness (when I sit or when I walk or in bed or most anytime). Gabapentin calms it down a bit. I am careful to wear shoes with supportive insoles. Massage helps but has no lingering/lasting effect. I’m flying today so I’m sitting here in the plane thinking about them. Distraction can help (when I teach, I can lose awareness of them).
Not what you're looking for?
You may also like...
Still trying to figure out what's wrong
It's been almost 8 months since my lightheadedness and dizziness began and about 6 since the right...
I don't know what's wrong is it Ms sjogrens?
I had my gallbladder removed Oct of 2013 I was having loose stool before that and it continued...
What's Your First Self-Care Remedy During an MS Relapse?
Saw this article and thought I would share it. “What's Your First Self-Care Remedy During an MS...
What's In Your Basket???
Assuming that most MS sufferers have a "Basket of Intolerables," what are the largest few items in...
MSAA Awareness Month Started March 1st! Here's a sneak peak of what's to come! Enjoy!
Hello everybody, young and old, new members and our old pros, Ms Awareness month iis here and it...
Post 529 Assume I am wrong 30 Sep 2019 2
Defining primary progressive MS.
