My MSAA Community
3,758 members7,128 posts

Seeking common symptoms

Hello beauties! I have a question. Or, am sharing symptoms. wondering if any of you go through the same thing.

So here is the deal. I will go through these periods of a week or two of all I can do is sleep. When I say sleep I mean for 15+ hours a day and can just barely stay awake. The next symptom. This is worse. I can't even read my phone. My laptop is a struggle and forget about the attention span to actually read more than a text. Even then I have to read it three times to make sure I understand it before I respond. Just in case I do not, then sound like an idiot.

The next thing is my cognitive issues make me feel stupid. I can't understand anything. I feel so bad for my family. Having a conversation we me must be enough to want slap me. People have to repeat themselves 10x's and God forbid someone has to spell something or give me a phone#.

Anyway. It has taken me an hour and a half to write this

37 Replies
oldestnewest

I am sorry you are having these issues, it must be very frustrating.

I wonder how much is from the ms and how much might be from meds. If I remember right, you also take pain meds for your back? Have you started any new meds recently? Perhaps another talk with Dr's to see if it could be drug interactions? Sorry I'm not much help...

7 likes
Reply

lois52 These are symptoms I have had for the last couple years. We have even tried detox from pain meds to see if that was it. Grateful beyond belief for you inout.! Any and all helps. Never know what tidbit is going help!

8 likes
Reply

Yes i have same problems

7 likes
Reply

Well, crap. As much as I was hoping to just think it was me a fluke. I hate to know someone else suffers from this. I am so sorry!

9 likes
Reply

I know rite😥

3 likes
Reply

When you’re in a period of lots of sleep, does everything else get worse, too? This is probably a silly question, but have you been tested for sleep apnea? I used to sleep A LOT and it’s so much better now that I use a CPAP machine.

My cognition is my biggest problem (and it’s why I’m not working). For years I kept saying that I don’t feel very smart anymore and it just kept getting worse. It seems worse when I’m under stress—so, particularly bad when I was trying to compose pages of writing while having trouble with finding words, for example.

I have to have instructions broken down into simple steps; ask for things to be repeated; and retrace my steps constantly.

8 likes
Reply

Lilith08 Somehow that got into my medical record that I had it. (Sleep apnea.) and I have had dozens of surgeries and well, every hour they would come (at the hospital) into my room turn on my light and asked me if I was still breathing. I was like "I am f'n talking to you so yes!) So as soon as I healed from that surgery #4 I thin it was. I went and got tested. I do not suffer from sleep apnea. However. I pray to God as soon as we have insurance my wife gets checked and gets one of those machines. That woman can wake the neighbors! Her snoring is so bad I have earplugs on a String. Just in case one falls out. The cat really liked the individual ones. we find them everywhere. it is hilarious! Love that cat!

Anyway, I would say yes. My symptoms all increase during this time, especially cog fog. You can't tell me anything. I will forget before you leave the room. One time my wife said we are late lets go! I said ok. I am ready. She walked out started the car and 15 minuets later called me and asked if I was still coming. So to quote you Ï don't feel very smart anymore.

Thanks for the inout! I appreciate it more than you know!!

Rob

2 likes
Reply

Oh, my gosh—thank goodness for your wife! 😅

1 like
Reply

Lilith08 You havde no Idea how much that woman means to me!!!!

2 likes
Reply

You’re not alone Rob🤗

I use to sleep 10hrs and have more comprehension and communication difficulties than I do now. The worst was being too tired to play with V by 11am. Keto fixed most of that for me. I took amantadine for a while and it helped some in the morning.

3 likes
Reply

kdali another kept diet convert huh!? There are so many people in my circle that swear by it. I just don't have the strength to cut out carbs and sugar, and OH! We have THE MOST AMAZING DONUT SHOP right around the corner. That being said. I see it do wonders for people. People I never thought would diet, let alone need to be on a diet. Consider your input one more nudge!

Rob

3 likes
Reply

I’m swearing by it too, but it’s not magic. There’s no food worth going back to my former miseries.

My neuro was impressed when I told her G couldn’t believe how clear my mind was during a relapse. (“Yeah, her body is shit right now but her mind is sharp and she’s not sitting on the couch like a lifeless lump all day”). Aww, shmoopie 😍😂😵🤪) He’s seen me go through a few, so he knows the drill.

You have seen these changes for yourself and still have not jumped?!

How about a BOOP? 😆

3 likes
Reply

I’m not on ketogenic diet (except possibly by accident from time to time) but am following the AIP, or Autoimmune Protocol, which is a Paleo-based elimination diet. I’ve been doing it for more than a year now and in the past month or so I’ve felt that my cognitive issues seem to have improved, though sometimes I wonder if it’s just that I haven’t been trying to do anything particularly taxing.

The other thing I’ve noticed, and I have no other explanation for it unless it’s just a happy accident, is that for the first time in nearly 20 years I’m not getting overheated. Sure, it’s hot, but my face isn’t as red as a beet and I’m not wilting or needing to sleep for a day after venturing out!

Do DMTs help our systems recover like that (I didn’t think so but I could be terribly mistaken), or is it possible that all the healthy oils and other nutrient-dense foods are doing it? Or I’m just imagining things and/or having a good spell for a few months...?

4 likes
Reply

Cognitive and heat tolerance improvements are some of what I am seeing also! Some people do feel better on DMT’s, but I think it’s only a few of the more recent creations; Tysabri comes to mind. None of them I guess are suppose to do that.

It’s hard to believe that lifestyle changes can help, especially when you find those changes to be easy or enjoyable. Or when conventional wisdom says it’s impossible.

Whatever you’re doing is working and I’m so happy for you! Isn’t it great not to have your butt kicked at every turn during the summer 😆☀️ Enjoy!

1 like
Reply

I’m on Rebif, which is an old interferon, so doesn’t seem to fall into that category.

Going Paleo wasn’t easy and it’s still a lot of work (very few convenience foods available) but the results are worth it.

1 like
Reply

I don’t know though, maybe search around and see if people feel better?

My go to convenience food is deviled eggs! I agree! Can’t argue with results 🎉😍

3 likes
Reply

KETO not Kept

2 likes
Reply

I got it! I’m well versed in spell check now. Sometimes I refuse to correct it and tell people if they can’t use context clues to figure out my messages, then just forget about it!

2 likes
Reply

kdali Only you would make people suffer the way we do!!!!! LOL!

2 likes
Reply

Wha? 🤷‍♀️ 😆

1 like
Reply

So far I've only had one round with inability to stay awake for more than 10 minutes at a time. That lasted for about a week. I also search for words I want...and I have to do that in 2 languages instead of just one. My husband and his family only speak Italian. I've also had trouble spelling. As a kid I won several school spelling bees and never had trouble spelling before. It's aggravating. I also now have to write out step by step instructions on how to do various things at work or i won't remember how to do a particular task. I can't remember more than 3 things on a list and even that's a struggle. I've also have bouts of complete amnesia and that's downright terrifying. Trust me you're not alone in your frustrations. We are all here for you.

5 likes
Reply

Peruzzot hey! Thanks for the support! Very grateful my friend

2 likes
Reply

Hi rlh1974 I Do know what you mean! And I hated it! No matter how hard I tried, I couldn't help it!😪😭

1 are you having a relaspe?

2 are you depressed?

And 3 get on modnifili!

~ I'm not a Dr. But talk to yours!!!~ That's no way to live Rob! Feel better soon! 🤗💕

J🌠

4 likes
Reply

3) Modafinil / Provigil—did that help with memory, cognition, or sleepiness? My neuro prescribed it once but I didn’t keep up with it.

2 likes
Reply

It's for sleepyness Lilith08 which I think helps me with my memory and cognition.😀 🤗💕

J🌠

3 likes
Reply

Jesmcd2 Sarcastically. "I think it helps"Buwahahahahaha"

2 likes
Reply

Look I need all the 'help' I can get!🙃🤣😭

🤗💕

J🌠

1 like
Reply

Jesmcd2 1. yes 2. no, I have a great pjycologyst. 3. I will read up on this Modnifiill

thx

3 likes
Reply

I'm so sorry you're going thru this. I'm sleeping a lot also. Lately, I've had to ask people who are explaining unusual subjects to me to slow down and sometimes to repeat info so I can write it down and make sure I understand. That's when I tell them I have MS

so they realize why I'm asking them to repeat it. I always say it with a smile.

Leslie

5 likes
Reply

rlh1974 I sleep at least 12 hours at a time. 18 is my record! It's so crazy! But at least with the Nuvigil (started about 6 weeks ago), I can stay awake for 16 hours, which I am grateful for big time. It's just the the new norm, I suppose, so I accepted it and get through each day with God's Grace. Blessings and hugs!

2 likes
Reply

Hi Rob! I have always been told by people how amazingly intelligent I am, but that sure doesn’t happen anymore! I feel like such an idiot when I am on the phone. First of all, this glorious disease has taken about 80% of my hearing, so I have to explain to people I am basically deaf. Then if they are giving me a phone number or something I have to write down, I just cringe. Because now after telling them I cannot hear them I have to tell them I have MS and can barely write, so please go verrrrry slowly! Oh man, I never thought my life would come to this, did you? I pray you find something to help you. Let us know. By the way, I had a CPAP machine for about five years, you won’t believe the difference in your wife! Love, Kelly

2 likes
Reply

I am just the opposite right now. I have this internal clock (or maybe it's the birds!) that wake me around 5:30 each morning. Steroids make me exhausted but unable to sleep, and I just had 1000mg methylprednisone with my 2nd 1/2 ocrevus infusion. I doze off and on during the day but am averaging 4 hrs sleep a night. So tired I could cry.

My neuro says MS really messes with our sleep, she does studies on it.

And the cog issues too, this took me over 1/2 hr to write.

1 like
Reply

lois52 That is the other half of my life. I go weeks where I sleep but am totally aware of what is going on around me. My wife gets up at 5-5:30 with the dog. So I just get up make a pot of coffee, fill a thermos, and a cup off coffee and a breakfast. I go to my chair. (My wife always naps in hers after the dog since her start times vary from 9am until say 1pm) Anyway. So, I go to my chair in the room with my coffee and breakfast bar.. Put in my earphones and watch TV.

2 likes
Reply

I don't recall, did you say you have had a sleep study?

As Amore55 suggested, it might be a good idea for your wife. My husband is having one done soon. He is exhausted as he wakes so often. Plus I have enough problems sleeping without his snoring!

My ms neuro also wants me to have a sleep study done. She says ms can really mess with our sleep. I noticed she has done several trials related to ms and sleep.

I have tried the natural route with Valarian Root and magnesium, doesn't seem to help much anymore. I have found taking a xanax will usually get me a good night sleep.

1 like
Reply

I have cog fog, too. I got tested a year and a half ago by a neuro psyche who told me I WAS NOT stupid! (Nice to hear.) My brain is like a computer that is buffering. So while I'm searching for words, I can see in my mind's eye, that little circle spinning and spinning and...

3 likes
Reply

mrsmike9buffering buffering on dial up! Sounds like me. Sometimes when I am searching for a word, I swear I can hear the dial up sound!!!

3 likes
Reply

I feel like I have an advanced degree in cog fog. When I had the neuro psyche testing last year, It at least reassured me that I'm really not a dork, just a gal desperately trying to put NO ENTRY signs on MS's secret doorway.

The nice doctor even asked me if I had been identified as 'gifted' as a child. Blush blush, small smile, why do you ask? Well, you have an amazing vocabulary, which was picked up in the part of the test that asks you to name words you can that begin with a letter M...... At least, I THINK it was M, I can't really recall..... might have been S......

3 likes
Reply

You may also like...