alarming new symptoms of something?

[wheeler641]

Waiting for my next appoinment with my rhuemy on the 19th, I still have to have the mri and some more labs done. Some of my latest symptoms make me think I should also see a nuerologist. About 5 times I was sitting watching tv sitting up and just fell asleep, just like that sitting up, I awoke in about 10 minutes and it felt like my whole body was pulsating. The first time it happened I thought I was overly tired with the holidays and relatives from out of town, but then it has happenned at least 5 more times. Tonight I again was just sitting there and I fell sound asleep, my grandaughter came in and startled me and for a minutes I felt very disorientated and got that whole body pulsating feeling again, this is beginning to scare me. I still have the twitch in my eye which now has spread to nose and my eye brow. I also get a squeezing like sensation in the left side of my head and the other morning I woke up with my eye hurting, felt like someone ruubed it with a brillo pad, bought some visine for dry eyes and it got better as the day progressed. I still have the nueropathies in my toes and tiny electric shock like feelings in my toes accompanied by numbness. But this other stuff going on is something different Anyone have any input, I have nver been able to fall asleep this quick, ever, ever. I am usually up past midnight and always had an abundance of energy, thanks margaret

 

[rose]

Margaret,

I think it would be reasonable to see a neurologist for something like this. I know that neurologists actually specialize, and it would be good if you could, to see someone who's field includes seizures, (rather than, say, spinal cord injuries). You may find it is quite a wait to get in to one, but perhaps your primary care or the rheumy you're to see can help with that (also with choosing the right one)

I know how unsettling this would have to be! Please take care, and keep us posted.

 

[BethU]

Margaret, I agree with Rose that seeing a neurologist would be a good idea.

I don't have any educated information to add, but I want to say that I am (maybe) in the same boat. Since last summer I have been awakened (5 times) in the middle of the night by violent seizures, but also have experienced several unexplained "lapsing out" episodes where I don't exactly fall asleep, but seem to lose awareness of where I am. These happen during the day. I "wake up" standing in the middle of the room, not knowing how long I've been standing there. Sometimes I am standing in strange positions ... my foot in the air, etc.! They are not "senior moments" ... I know what I was doing beforehand ... but somehow, I have lost consciousness without falling.

I have no idea if any of this is connected to my ALS ... to me it "feels" different, but who knows? I'm am currently waiting for the insurance OK for waking and sleeping EEGs and also an MRI. I also have painful eyeballs (both of them), which the neuros can't explain at all, so I am going to the optomitrist on my own dime this week to get some sort of answer on that. About my eyes, I suspect side effects of a med I take to reduce saliva ... info on this med says it can cause glacoma, and I need to rule that out, as that causes permanent damage to the eyes. I don't need ALS plus blindness! But maybe it is connected to these strange episodes. It is all up in the air.

It seems there are limbolands inside limbolands when you have neurological problems.

I know this is no comfort to you, but it was a comfort to me to read your message and know that I am not completely alone on this. I really wish you weren't going through this, too, but I appreciate your sharing.

I also have other sensory symptoms that I know are NOT at all related to ALS, so I don't mention them here.

Let us know how you are doing, and what a neurologist says.

Blessings.

 

[wheeler641]

thanks for your replies beth and rose, what really concerns me is that it happens without warning, no yawning, no saying to myself" boy am I tired", I don't even feel my eyes closing. The first thing I did when I was awakened was take my blood sugar , just to see if maybe it was high enough to put me into a coma like state. It was 180, a little high, but nothing that would of caused an episode like the ones I have been having. Beth I can relate to what you are saying that it is not a senior moment, sometimes I get up and forget what I was getting up for, or put my laundry away in the wrong drawers it is not like that, it is one momemt I am fine and the next moment I am asleep, I guess I am asleep?No one has ever been in the room with me when it has happenned.Beth, I too have some sensory issues, I guess you would call them that,. sometimes a peaceful feeling comes overs me, Kind of like I am having a moment of clarity and all is good and well. geez, maybe I have a brain tumor or something, well I better stop posting this stuff now before everyone thinks I am nuts and stops responding to my posts. Also this is an als forum and I am pretty sure none of this relates with als.

 

[BethU]

Margaret, I have had those moments of euphoria, too ... they started a year ago, but I haven't had one for a month. Actually, they are wonderful ! You're right, they are not part of ALS, but I believe they may be connected to something amiss in the bulbar area of the brain. I am taking a med for emotional lability and the medication affects the whole bulbar area, and it seems to have stopped the bouts of euphoria too. When I have those episodes, not only does the world look like I've never seen it before ... and it's beautiful! ... but I know that everything is OK. Everything (in the universe) is as it should be ... it is a deep sort of peace.

Hopefully, I'll find out more soon, and I'll post it when I do ...

Whatever we've got, it's rare!

 

[rose]

OK ladies, I want some of that euphoria! ...Beth, perhaps the eye pain is from dry eye due to the meds? My eyes hurt sometimes and I think its just the dryness. I went to a Lasik surgeon recently to see if I was a candidate for surgery because wearing contacts is so difficult because of the dryness. So, I'm sitting there going over my health history with him, first, I'm very far sighted - my correction for reading and distance is for far, not near, and then we touched on the dry eye, and that I have closed angle glaucoma, and have had surgery for correction (drains) did not know if that would exclude me from other laser surgery, then, the grand finale, the ALS. This guy was probably thinking that any one of my problems might be enough for one person's eyes, right? (maybe something along the lines of hmmmm this lady is just f****d) but, no, he was very reassuring and said "probably" and for me to discuss it with my neurologist.

Anyway, all of this to say that dry eye can be quite painful. - got to go, Steelers are set to play!

 

[BethU]

Rose, thanks ... you're probably right. That's what the neuro said too, when I told him my eyeballs hurt. I didn't know dry eyes hurt! My double vision continues to bug me, and eyesight is getting worse again, so gotta get some glasses with prizms, or else the old pirate eye patch for reading. I'm going to check the glacoma out just in case ... I don't quite trust these little patches for the excess saliva. I've heard bad things about their side effects.

(Another gorgeous avatar ... you are one gorgeous lady.)

GO STEELERS, VICARIOUSLY
Whatever, Lakers. Do Your Thang.
(Sorry, Wright. )

 

[Zaphoon]

Talking about the pirate patch, I had my eyes checked recently and you know how they have you block one eye off with a little, round, black paddle - well, the lady doing the exam gave me a second paddle that had little, itty, bitty holes all over it and man, did that make a difference! A cheater pirate patch! Have you ever seen anyone walking around with a pair of dark glasses with little holes in them?

Me neither but they sure would seem to work great.

Anyway, I wound up with my first pair of bifocals.

 

[BethU]

They sound neat. Hmmmm ... cheater pirate patches. Maybe I'll attach a little pirate flag to my new walker.

 

[Zaphoon]

That would be so cool! How about a little pirate boot on the feet of your walker? You could have three with little boots and the fourth peg-legged.

Personally, I prefer racing stripes on my cane.

 

[BethU]

Yesss, absolutely!

Aaaarrrrrgggggggggg .... that's the only word I'm still able to say, so it fits right in.

 

[Zaphoon]

That was good, Beth! You've made my day!

 

[rose]

Beth, lol the arggghhh ... Yes dry eye really does just hurt. who knew? And the picture was taken today, it was actually to capture a shot of Phoenix the monster cat, who was behind me, draped on his new "perch" on the back of the leather chair. We were getting geared up to watch the gam ~ well, I was getting geared up, very little gets the cat geared ~ and when Don took it of us, I said wait! I've got color in my face, need to make it an avatar, but poor Phoenix got cropped out (as did my tank top with the giant red wine stain).

Zaphoon, when we were bored on the plane, we would amuse ourselves by new "discoveries" one of which is if you put a pin hole in the bottom of a Styrofoam coffee cup, you can read just about anything by looking through the cup. It goes extremely slow though. It has to do with the prism effect that we actually use to see, and blocking out excess light.


OK, back to the game.

 

[Zaphoon]

You see, I knew that if I hung around this site long enough, I'd get educated. It just so happens I have a few paper cups around to poke holes in. You can guess what I'm off to do...

(kind of like using a magnifying glass on a bright, hot day!)

 

[brendapals]

You guys bring me so much laughter!

I think I would opt for the pirate's treasure chest riding in my van with me!:roll::lol:

AAARRGGGGGGGGHHHHHHHHHHHHH maties-way to go STEELERS!