[Kitty]

I had this question asked of me the other day and it got me to thinking.

For me, it feels like I'm trying to balance on balloons or balls. I always get the feeling that I'm going to tip over....even though I'm standing on perfectly flat ground.

When walking, it feels like I'm treading through sand under water. It might look like I'm just walking very slowly but it's an effort to put one foot in front of the other and keep my balance all at the same time. Maybe that's why I tire out so quickly.

Sitting for long periods of time requires that, in order to get moving again, I have to stand up and "get my bearings" before I attempt to move. Otherwise, I'll lose my balance and stumble.

Carrying things and/or lifting things like a glass or a breakable item requires my full attention. I have to concentrate on holding onto the item - especially if it's in my numb right hand - and quite often I hold onto it a little too hard. It's exhausting and probably the reason that, cognitively, I'm slow to react or respond. You can be tired mentally as well as physically and quite often both at the same time. Saying "I'm tired" is an understatement.

How does your MS feel to you? What are your invisible symptoms that others can't readily see but you can always feel?

[dmplaura]

Pain from the neck up.

Everything that should work from the neck up, sensory, doesn't work 'correctly'.

I have burning pain down 1 side of my face.
I have a tongue that feels like I've licked shards of glass.
Gums that feel like they've been scorched with hot coffee.
I smell diesel, plastic burning, smoke, chemical smells that aren't actually 'there'.
I have blurry to double vision (worse when stressed).
I often have a metallic taste in my mouth.
My cheeks feel like they have vein-y electrical pulses running through them.
Stabbing, sharp pains down my left side of my face when I have Trigeminal Neuralgia attacks.
I get a dull pain in my sinuses that feels like sinus infection - when there's no infection at all.
My head often feels like it's being squeezed by vice grips.
Tingling, crawling on my scalp, down the back of my head....

I could go on and on. Basically, nothing feels "by design" from my neck up. It's a new adventure every day.

[SallyC]

Poopy, you made me think about my MS..UGH!!!

Mine is pretty much like yours, Kell, except I don't walk much anymore. Sven, my scooter carries me to and fro, most of the time.

I miss not being able to do what I want to do, when I want to do it. My pain is managable, thank heavens. I don't know how some of you deal with chronic nerve pain.

Not only have I had MS, since my early 20s, I'm 70 yrs old, so I have a double whammy.. Aging and MS don't mix...ya don't know if your discomfort is from the MS, age or both.

My MS makes me feel like someone is physically abusing me every day of my life. I try to keep a possitive attitude and keep my psychy straight, so I can eek some happiness out for myself and others, but it is a damn struggle.

Other than that, how did you like the play, Mrs Lincoln.

[Blessings2You]

Sally, you can find humor anywhere, God bless you!!!

I'll be back to respond to the thread later, when/if I can think!!

[0357]

I have been hit cognitively and emotionally where MS is concerned...

I feel like an alcoholic and drug user all wrapped into one

[Kitty]

The vision disturbances....how could I have left that one off? Blurry sometimes.....is it allergies or MS?

Heat intolerance. Well, now I actually have a good excuse for wanting to be inside in the A/C away from the heat, humidity and insects! Living in GA that is almost 9 months out of the year.

Potty issues . Not really a huge issue for me....as long as I am near the facilities. Since I can't walk fast....or run....I have to give myself plenty of time to get there. So there is alot of anticipation going on. Which is mentally tiring in and of itself. Especially if I happen to be somewhere other than home.

Cognitive. I'm so much better in the morning. By late afternoon/evening I'm tired and mentally spent.

All invisible symptoms to everyone but me. No wonder MS is so misunderstood.

[dmplaura]

Pre-MS: Ugh, I feel sick.... I bet I'm coming down with that flu that everyone at work has.

Limbo-period: Ugh, what the heck, the flu doesn't normally come with extreme vertigo, numb hands, electrical zaps and buzzes...

Post-MS diagnosis: Ugh, I feel sick.... better check for a fever to determine if this is the flu or MS.

[Mariel]

Sally, I love that quote "other than that, how did you like the play, Mrs. Lincoln?"

I too have had whatever I have in active form since 17, with a few preliminary attacks such as the one at 11 when I had poor eye-hand coordination and exhaustion which no one believed I really had....a precursor to years of the same later. I have been dx'd with MS, Porphyria, Polycythemia Vera, and Monoclonal Gammopathy. I may have them all. Porphyria has so many neuro symptoms like MS that it's hard to tell them apart, and I do have the brain lesions found on MRI a quarter century ago when I got MS diagnosis--about 25 years ago, too tired to count the years.
It's been a long life, Sally, for me too, and I'm wishing to go "Home".

Mariel

Originally Posted by SallyC

Poopy, you made me think about my MS..UGH!!!

Mine is pretty much like yours, Kell, except I don't walk much anymore. Sven, my scooter carries me to and fro, most of the time.

I miss not being able to do what I want to do, when I want to do it. My pain is managable, thank heavens. I don't know how some of you deal with chronic nerve pain.

Not only have I had MS, since my early 20s, I'm 70 yrs old, so I have a double whammy.. Aging and MS don't mix...ya don't know if your discomfort is from the MS, age or both.

My MS makes me feel like someone is physically abusing me every day of my life. I try to keep a possitive attitude and keep my psychy straight, so I can eek some happiness out for myself and others, but it is a damn struggle.

Other than that, how did you like the play, Mrs Lincoln.

[Mariel]

It has helped me to read all of these descriptions, to revisit some of my own neuro symptoms, since I am focused more (too much) on my rare blood diseases these days,
which add to the foot neuropathy very badly.

It seems many of you---almost all of you--have the same acute and occasionally stabbing pain, as well as numbness (how to have both stabbing pain and numbness) that I have. Mine is primarily in my feet. It seems to be a combination of neuropathy and
erythromelalgia, a condition where the microvascular things in the extremities get clogged with too much blood or too sticky blood or too thick blood (doctors seem vague on what this is). If I take Interferon chemotherapy, the feet improve a lot, but the INF
has horrible side effects....absolutely awful.

I also have had loss of balance, but it helps to do Balance PT, which I am again involved in now....PT always provides help for me even where I thought it impossible. My balance
was pretty good most of my life but now it's much less good, so I have to be careful.
Again, I do not know which of my diseases causes the imbalance...maybe all of them.

Spasticity, which a few of you described, is my most characteristic response to a drug or
food which is bad for me--which may be primarily a Porphyria sensitivity rather than MS.
I get very spastic, too, if I don't have enough magnesium and calcium in my diet, and B1
helps too. I got so spastic on one drug, an antibiotic which I forget the name of, that I could not walk around a corner and I lost all color vision.

I had a long period of eye trouble but it is mostly gone now, for many years. things have changed and morphed a lot for me. Like Sally, I have had MS and or the "other thing" for way over 50 years, and I am plumb sick of the whole thing. But I have enough good food (Swank diet) and warm house and occasionally see my grandkids, and have hope in God, so I am ready for the last lap (but wish I didn't have to take it).

[SallyC]

Originally Posted by Mariel

Like Sally, I have had MS and or the "other thing" for way over 50 years, and I am plumb sick of the whole thing. But I have enough good food (Swank diet) and warm house and occasionally see my grandkids, and have hope in God, so I am ready for the last lap (but wish I didn't have to take it).

We all have to take that last lap, Mariel, but I feel that we may not have to spend as much time in purgatory and swoosh right into heaven..