Here are some odd questions but I need to ask them.

1- For any of you, has this ever happened? Has your brain ever felt like it is being squeezed to the point of hurting? Not like a headache/migraine. But like it is shrinking. Or- like a sponge that is getting the water squished out of it?

2- Sometimes I can't taste the food I'm eating.

3- My sense of smell is sometimes not working or completely gone.

4- Appetite gone. Food makes me want to throw up.

5- Heat makes the vertigo/fatigue severely worse. Just want to run into the airconditioned home. Heat is awful.

6- Morning is the best time of day. I thrive for any time before 10:00. After that time of day I'm just useless. Is that just me?

7- I lost 4 pounds this week without dieting.

8- Dazed/Fog Headed. Made toast yeasterday. Somehow I put the toast in toaster. Stood by toaster forgot what I was doing- dazed into the room- like I was in sort of a trance- realized it was 20 minutes later! Then realized- the toaster wasn't plugged in!!

9- Problems swallowing. Stuttering. Slurred speach. Problems finding words to use when talking. Problems thinking. Problems doing simple math. Very embarrassing.

10-Simply embarrassed to walk. Vertigo so bad at times afraid to drive.

There is a lot more but that are a few I have most questions about that my neuro will not answer for me. Imagine that!

Thank you.

Coffeegirl

1- For any of you, has this ever happened? Has your brain ever felt like it is being squeezed to the point of hurting? Not like a headache/migraine. But like it is shrinking. Or- like a sponge that is getting the water squished out of it?

Yes! hard to describe, but you did well.

2- Sometimes I can't taste the food I'm eating.

Loss of taste is common on many medicines, and with many conditions. I still enjoy my taste buds.

3- My sense of smell is sometimes not working or completely gone.

As with #2 sense of smell can come and go with many meds, and conditions. Do you use a nasal allergy spray? They can strip out the sense of smell too. This can greatly affect your appetite as we smell our way into an food. Our brain smells food, and it sets off a chain reaction.

4- Appetite gone. Food makes me want to throw up.

Sense of smell/taste being gone, i am not surprised. Stick to simple easy to digest foods. Eat simple easy meals 6 times a day instead of 3. Be a nibbler.

5- Heat makes the vertigo/fatigue severely worse. Just want to run into the airconditioned home. Heat is awful.

Heat intolerance is very common in MS and other neuro conditions. MS isnt the only one, but its one of the most definitive ones for heat intolerance. They used to stick folks in a hot bath tub to see how they reacted as a way to diagnose in days gone by.

6- Morning is the best time of day. I thrive for any time before 10:00. After that time of day I'm just useless. Is that just me?

Well rested and ready to go in the AM is me. by 2pm I am dragging and need rest.

7- I lost 4 pounds this week without dieting.

You spoke earlier of food making you feel sick. Loss of taste and smell can cause this too. If you need to lose weight, be careful to not over due it. If you need to gain weight, then stick higher calorie treats in thru the day. Not a license to snack all day on junk food, just go for the fattier stuff like cheese, or juices which have tons of calories.

8- Dazed/Fog Headed. Made toast yeasterday. Somehow I put the toast in toaster. Stood by toaster forgot what I was doing- dazed into the room- like I was in sort of a trance- realized it was 20 minutes later! Then realized- the toaster wasn't plugged in!!

Common occurance in my house is for the husband to come finish what I start. I stand there lost in a daze, as he finishes the laundry or the breakfast.

9- Problems swallowing. Stuttering. Slurred speach. Problems finding words to use when talking. Problems thinking. Problems doing simple math. Very embarrassing.

Very common occurance on many of the meds we take, as well as many of the neuro diseases out there. I found once I removed some of my meds, my ability to find words came back. Still cant walk and chew gum at the same time, but speech is better.

10-Simply embarrassed to walk. Vertigo so bad at times afraid to drive.

PLEASE DONT DRIVE if you are impaired. its not worth the risk of killing someone else, or yourself. Schedule your stuff in the AM when you said you are fresh and capable, and avoid the afternoon appointments as you said you are wiped out. Please be careful!

I do hope you are able to find the answers you seek.

Thank you for your info.. and your nice comments. They were also uplifting.

I answered in red.


1- For any of you, has this ever happened? Has your brain ever felt like it is being squeezed to the point of hurting? Not like a headache/migraine. But like it is shrinking. Or- like a sponge that is getting the water squished out of it?

Never had this sensation. I have MS and I've had other strange sensations like buzzing or numbness. Sometimes it feels like something is crawling on my head.

2- Sometimes I can't taste the food I'm eating.

Never had this sx.

3- My sense of smell is sometimes not working or completely gone.

Sometimes I smell things others can't. I believe this is due to a lesion in a certain part of my brain.

4- Appetite gone. Food makes me want to throw up.

I rarely have an appetite anymore but I believe it's due to a combo of the meds I take (LDN) and the vitamin supplements I take. Also a result of the drastic dietary changes I've made over the past year.

5- Heat makes the vertigo/fatigue severely worse. Just want to run into the airconditioned home. Heat is awful.

YES! Heat is my number 1 enemy. I become a hermit during the summer. Heat + humidity is a double whammy.

6- Morning is the best time of day. I thrive for any time before 10:00. After that time of day I'm just useless. Is that just me?

Sometimes. Immediately after I get up in the morning is when I have the hardest time walking. Once I move around a little it's much better.

7- I lost 4 pounds this week without dieting.

This is concerning. Especially if you haven't changed your eating habits. Now...if you have no appetite and aren't eating then it's expected that you'd lose weight. But that's not a healthy way to do it. Do you take a multi-vitamin?

8- Dazed/Fog Headed. Made toast yeasterday. Somehow I put the toast in toaster. Stood by toaster forgot what I was doing- dazed into the room- like I was in sort of a trance- realized it was 20 minutes later! Then realized- the toaster wasn't plugged in!!

Sometimes. Usually when I'm overtired or trying to do too many things at once. It's hard to multi-task anymore.

9- Problems swallowing. Stuttering. Slurred speach. Problems finding words to use when talking. Problems thinking. Problems doing simple math. Very embarrassing.

Those of us with MS find this sx to be the most irritating. It happens to me quite often.

10-Simply embarrassed to walk. Vertigo so bad at times afraid to drive.

I have to stand for a minute if I've been sitting for a long time or I stagger all over the place when I try to walk. Sometimes I take my cane even when I don't think I need it just so people won't think I'm drunk!

Kitty,

Thank you for your info as well... It has been very helpful. It is reasurring. A lot makes so much sense to me now. I have no clue what dx I will end up with but for some strange reason I've always had a gut instinct that MS is what is wrong with me. Who knows... it could be anything and until they do more testing I won't know for sure. But ironically I have so many more symptoms that are MS related it is very scary.

When I talked with someone close to me today for support it didn't go well. I have found who really is there for you and who is not when you get sick. It really puts things in real perspective. It hurts really bad.

I take every day to what it is worth. Even when I slurred thru the entire conversation this person 'told me'- I do that too... 'It is all mental'- GRRRRRRRR!

Need to get going... I'm so sick of people telling me its in my head, mental crap etc.

It gets old.

Thank you all for your help. I can barely see the computer screen.

Hugs

Coffeegirl

1- For any of you, has this ever happened? Has your brain ever felt like it is being squeezed to the point of hurting? Not like a headache/migraine. But like it is shrinking. Or- like a sponge that is getting the water squished out of it?

I said the ball of pain in my head that sometimes feels like it's in a vice grip of sorts is like a ball of tightly packaged dough, and when I try to get through a pain episode, I imagine it being pulled apart gently, like kneading a ball of dough flat out.

2- Sometimes I can't taste the food I'm eating.

Most of the time, I have to load my food up with sodium free spices to taste anything! I like mustard a lot too, as I can usually taste that, but for the most part, food doesn't taste at all what it used to. That was added incentive to quit smoking at the time. I thought my taste would come back! No such luck.

3- My sense of smell is sometimes not working or completely gone.

Same. I have phantom smells too (as another mentioned) - I smell things, mostly burning/fire smells, that aren't actually there. Sometimes perfume/floral too that aren't there.

4- Appetite gone. Food makes me want to throw up.

My appetite jetted off when I was on Elavil (Amitriptyline). I'd forget to eat, literally! Food doesn't make me want to throw up though, I'm not a doctor, but it sounds like that could be nerves doing that. It COULD be something else though, I know I get nauseous out of the blue, and if you suffer migraine, there you go!

5- Heat makes the vertigo/fatigue severely worse. Just want to run into the airconditioned home. Heat is awful.

Getting in a hot tub of water = glorious for my head. Being in heat and humidity from weather = dreadful, flare up of my sensory symptoms completely. I have to sleep with A/C on, if I don't I wake up half in relapse, literally.

6- Morning is the best time of day. I thrive for any time before 10:00. After that time of day I'm just useless. Is that just me?

I generally improve over the course of the day. I often wake up with head pains bad....at least the last while! I will say though, I suffer from burning mouth syndrome (3 years going strong, sigh) and it's much better in the AM than later at night (like now, lol!).

7- I lost 4 pounds this week without dieting.

If you're not able to enjoy food, and you're feeling sick when eating, this could explain the weight loss. Have you been eating less or physically sick?

8- Dazed/Fog Headed. Made toast yeasterday. Somehow I put the toast in toaster. Stood by toaster forgot what I was doing- dazed into the room- like I was in sort of a trance- realized it was 20 minutes later! Then realized- the toaster wasn't plugged in!!

I honestly have mistaken people for other people for the entirely of conversations before. It was during a period of preoccupation with my mind, thinking about the MS after I was newly diagnosed and scared stiff about relapsing (was having a bad MS day). It could be just that, you have a lot on your mind and you're forgetting mundane tasks in front of you. It could be cognitive. I know I forget stuff all the time because I get focused on 1 thing or daydreaming.

9- Problems swallowing. Stuttering. Slurred speach. Problems finding words to use when talking. Problems thinking. Problems doing simple math. Very embarrassing.

I was diagnosed with abnormal swallowing by a dental pain specialist before MS.

10-Simply embarrassed to walk. Vertigo so bad at times afraid to drive.

I went through horrible vertigo twice. I figure it was my MS doing it, but my neuro insists this was migraine or inner ear only. Well, it wasn't room spinning vertigo, it was vertical (up and down) vertigo. It followed my eyes when I blinked. Scary stuff! (ps: I've been a migraine sufferer since I was very young, 5-6 years old I had my first, I began having Trigeminal Neuralgia attacks at age 24/25)

Yesterday when I went into the bathroom to brush my teeth, I found I had put my hairbrush in the glass with my toothbrush . . . a real first for me.

I hope you can get some answers . . .

This makes me feel so much better. I now know I am not going crazy... LOL

No.....you're not going crazy. And it's not all in your head. I hate it when people make that generalized assumption.

Sometimes I think we focus so much on the things we're doing differently (not wrong, but differently) because of all the symptoms that we tend to be unjustly hard on ourselves.

Sorry to hear all of that coffeegirl. I have definitely experienced what you are/have gone thru.

The squeezing of the brain-- I get that when I laugh too much or smile for too long. its always the back lower left portion of my brain that feels squeezed and yes it does hurt. Usually when I frown it actually helps loosen that tightened area in my brain up. (as crazy as that sounds)

Heat/vertigo--Its awful! I hate the vertigo. Yes it gets worse with heat. Also if I turn my head while walking the vertigo kicks in or if I look directly straight up I fall over because the spins are so serious. and yes walking like your drunk sucks and is SUPER embarrassing.

Mornings- I always have more energy in the morning, once noon rolls around I have to take a nap so I can stay awake til 8. It sucks as well and I hate it. Here's my personal saying/agenda--- I'm late to wake, early to bed, with naps in between.

I don't like these arrangements as I am only 22 and I operate not like a 22 year old but of an elderly persons schedule but I can't stay awake til 10 anymore. Shoot, I am lucky if I make it to 9 lol.

I hope that this helps you feel a lil better about those really weird things your experiencing.

MS is such a bizarre disease. I experienced a 'POP' in my brain last year that I FELT and heard and my neuro still has no explanation for me...