I shouldn't laugh but I love you 'star character in Dumb and Dumber' line. thanks!
i feel the same!!!! one big tooth ache but throbs in spots, and my memory loss.....well I feel as though the I am the star character in Dumb and Dumber.....basic math has become such a chore - and this ***** b/c Im a night auditor.
Here's one I've had off and on and didn't see in the string:
Trigeminal Neuralgia (TM) - excruciating pain in a tooth like the nerve has been exposed - moves from tooth to tooth
Good thread for frequent resurrection, LauraLu. I saw you once or twice suggested making a Health Page of it; still seems like a good idea to me (would that I had time).
Working on info to share with neuro this Friday, and there were numerous ideas on this thread that helped me remember the things in the first place, and then gave me help in articulating those things. We'll pray that it helps him understand and figure out what's going on.
I really loved the "walking through water" description for fatigue, but I might even say "walking through Jell-O." Sleep seems mandatory, but is rarely effective.
the current discussion about our oddest symptoms made me think of this conversation - it can be difficult to put into words what we are feeling so the docs also understand....
Do the MS symptoms described above only happen during flares?
Or does it become part of the daily life?
What I mean do you get numb legs , vertigo, spasms, 24/7 during the flare and then it all goes away and the body becomes normal once the flare ends?
Or
You get a numb hand for 10 minutes, then 2 hours later you get muscle twitches in the leg for 5 mins them 6 hours later you get vertigo for 2 hours, then it all stop to come back the next day with other symtoms, even if it is not a flare?
Do the symptoms happen during flares only? Or even in between flares?
I tell doc fell like I have held on to an electric fence and days later still feel it. After reflex test I still vibrate later into the night
I got luck and searched for 'how do you describe' and this was at the top of the list. I hope this helps.
Great thread I have been on vacation for a week so I am reading it for the first time. It is the most comprehensive description of Ms symptoms that I have ever read!
New addition:
Leg spasticity- feels like dragging a thick, stiff heavy log everywhere I go
Mixed brain signals-my leg doesn't move when I try to move it, I feels like someone unplugged it from my body
Fatigue- so tired that I feel like I've swollowed an entire jar of sleeping pills
Muscle fatigue- when I literally have to sit down immediatlely or I wil fall over
Deb
bump for Sarah's question about names for symptoms. These might not be names but are all good descriptors of the weird buzzes, zaps and pings we get.
Years ago I used to describe the weak feeling in my arms as "limp celery." They don't feel that way now, so I guess I need to come up with something else. Maybe celery that has turned into a brown sludge puddle in the bottom of the crisper.
Bottoms of my feet feel like I am standing on either freezing cold bars or burning hot bars, I can't tell or they switch back and forth.
MS hug -- feels like heavy gauge wire wrapped tightly around and around my chest just above my bra strap.
Emptying my bladder -- my boyfriend commented he never knew anyone who takes so long to pee, because it takes so long to get started and then I have to sit there and dribble for a couple of minutes at the end before I can get it all out. Since that time it also involves pushing on my bladder with my fist and bending over to help things along.
I don't have to pee while I am sitting down, but as soon as I stand up I need to find a toilet NOW.
parasthesias -- like electrical shocks are running up and down the outsides of my legs
falling -- I am walking along and suddenly I am on the ground. I don't remember the actual fall.
cognitive -- People say things that do not make sense like, "It is time to put the dog on the clothesline." (Actually said, "It's time to change the oil in the truck.")
well maybe we need a ms dictionary!! a thought..
brain fog- cant think of the right word-have to say a complete diff sentance with a diff word!
fatigue-soo drained just need to go to bed-if you can get there-eyelids are even heavy
numbness- in random places, just a spot can go numb-wierd
I'm bumping this lengthy thread for our new folks - especially oceans_apart. There are very good suggestions here. - Lu
Good discussion.
How about:
I know there is water in my spine and it's moving around! If you listen to it, you'll have to hear it! hahah Yup, I totally said that.
Did I put it into words good?
Radiculopathies - sharp white hot jolts of lightening running down my leg into the foot.
Paresthesias - icy/hot or biofreeze gel spread in big splotches
Heaviness - like weights strapped to a body part
Weakness - noodle legs
Fatigue - like walking through water
Abdominal spasms - similar to an induced labor
The first big episode was like walking through water with 20 lb weights strapped above each knee. The next day was like walking through water with 20 lb weights strapped above each knee in a pair of stiletto heels after a couple of cocktails too many. The nurse liked that description. lol
For the loss of coordination, I just told them my feet would stop, but my body kept moving forward. Or I tried to pour a can of something in a bowl and it went all over the countertop. It seemed to get the point across pretty well. They knew exactly what I was referring to.
Vertigo, like the room flips sideways.
Numbness, was like part of my foot was missing when standing on it.
Confusion - forgot how to sort laundry, can't put a meal together because the parts don't come together, have to rely on canned foods, can't put a grocery list together or decide what to put in the cart at the store.
Mud brain - nothing is clicking.
Patches of bugs biting - kept looking for mosquitoes when there were none there.
Muscle spasms - squeezing.
Head buzzing - feels like I've inhaled helium along with a few dozen bees.
Linda
Wobbly, perhaps we could turn this into a patient's glossary of symptom descriptions and store it as a health page. What do you think?
head is buzzing- feel like someone has implanted a tuning fork in my brain
Arms Burn- feel like I was in the hot sun and got sun burned
Fatigue- Feels like I went to the gym and lifted a 1000k pounds of weights over and over again.
Headache- feels like i have been hit with a hammer and my head is going to explode from the top to back of my neck.
MS hug- Feels like I am pinned between two large metal plates and it just gets tighter and tighter
Foot vibration- tuning fork on my foot
Pain- pain in my fingers just to type on my computer causes pain, I wake up crying almost everynight with pain. Mostly pain in my arms and hips are the worst
Heat intolerance- the warmth from soup, coffee, or sun makes me feel like I have the flu, dizzy, lightheaded, weak, nauseated. I have to stop everything and laydown and cool my body down.
Cognitive problems- I feel as if I am getting dumber and dumber. I cant even speak so I dont speak. When others speak to me I dont often understand the conversation and miss certain words of the converstation.
I dont want to be with others because I dont want to sound like and idiot.
I find that conversation uses too much energy as well.
Dont say what to me when I am speaking cuz I dont have enough energy to repeat myself and then I get very angry and start to cry.
I read the posts ....cried and laughed at the decriptions. Today I am at the end of my rope because not even my best friend understands what I and we go through.
Dawn
These things are all very helpful to explain precisely what we are experiencing. I'd suggest everyone try to take it one step further and decide on some examples of how the symptoms are changing or limiting your life. This relays much more information than 'I've had some really bad days lately" or "This is the worst pain I've ever had."
I've had a doctor or two ask specifically, "What can you NOT do?" It helped me focus but like everything else, it's much easier if we consider these things before an appointment. Visits are short, expensive and sometimes spaced at lengthy intervals. We need to make sure we make the most of our time rather than repeatedly stomping out as we realize we FORGOT what seemed SO important before we went.
I have found the docs are more inclined to take a symptom seriously and help me find solutions when they understand it's a quality of life issue. This is also helpful for me to keep tract of a symptom's progress or improvement.
For example:
I used to be able to walk around the block and only pause once along the way. Now I have to SIT DOWN to regain my strength after walking about 200 feet.
I used to get re-energized by creating goodies in the kitchen after a full work day. Now it's all a chore. My arms give out on me so quickly that I have to take two rest breaks before I can get the whole cookie batter mixed.
The 'worms crawling under my skin' sensation is so distracting that I can't fall asleep for hours. I'm only getting half the sleep hours I did a month ago and I feel asleep twice in work meetings last week.
I thought I was like most other women with children when my bladder let loose a little as soon as my eyes saw the toilet. So I used to keep a change of underwear in the bottom of my purse 'just in case' I'd need them. I had to actually USE my backup provision twice last month ..... OR I have to change into new pj bottoms once or twice a week now when I don't make it to the bathroom fast enough at night.
I'm not the happy and active person I once was. I used to be able to deal with daily aches and odd feelings. It's taking it's toll now. I still manage to do what I HAVE to but the joy is seldom there. I feel angry and snap at people. I have so little tolerance that I think my family is spending more time away from the house. Heck, I don't even like being with me these days. (It's often helpful to have a family member sitting in the background vigorously nodding their head in agreement.)
Helpful?
Anyone else?
Mary
Leg or Arm weakness i describe this to the doc as.
It feels like you have a sandbag tied to which ever limbs are involved.
Thats my way to descibe it, and Thanks for the other desciptions when i cant think of 1 i will refer back to this.
Take Care All and Be Well
Julie xx
It feels like one big toothache...a raw open nerve (pain in lower back)
I spent three days trying to remember the word "regression". I was trying to describe software "regression testing." I must have used this word 50,000 times in the last 20 years. I finally had to resort to Google and going to wikipedia and reading the article about software testing. It was there main as day.
Memory Loss = I have to look up concepts of Google to figure out the word I want but can't remember.
Totally embarrassing.
Bob
If I saw this thread in its' first life, I'll need to come up with something to describe memory loss in more colorful terms. No matter; it was good this time through.
I think this post should be added somewhere, so when people go to any specialist...they can prepare abit...
you would think after this many years, I would prepare...NO>>>> silly me
then I leave the appt without saying what I needed or wanted to say.
thanks for the post
wobbly