I think it's starting again.

[sayccrn]

Ok. I am not sure. but after my first 'whatever it was attack,' my symptoms slowly went away. Even my tremors, my eye pains, all of them. They would only come back if I was very tired or run down.

I don't think I am being paranoid here, but over the last couple of days, my tremors are increasing, worse at night, my eyes started to hurt, both the dull and sometimes sharp pains. more in my left, but in both, blurry feeling and just 'not right.' Usually the pain would come and go. Today, my left eye is stronger and weaker, but the dull pain is always there today.

My joints are killing me, hands, fingers wrists, shoulders, hips. My left soul of my foot is feeling like my arch is/has fallen, my left toes are cramping, my Traps are sore'er than my 'normal.' Itching especially in back when I am trying to sleep, then when I try to scratch them my hands/shoulders cannot do it for pain, and I end up hurting them trying to itch my back.

On and off tingling of hands and feet, feeling like I have a 'hair' but I don't on my left hand and feeling like I have a ring on my pinky finger on the right. Those buzzing, vibration bursts, like I have a cell phone, but I don't.

My balance is off more again too. Like when I get up to move, or walk around the corner, I will misjudge and end up running into the wall, as well as almost toppling over. I cannot stand with my eyes closed or I wobble like a drunk person. (If I ever get pulled over, I don't think I'd pass the DWI test, and I don't drink!)

BUT...I don't want to call my neuro just yet, I am not even as bad as I was when he saw me, so I think I should be worse so he can see that difference? I just can tell something is beginning again. If it was like last time, it will be a slow build up til I can barely control my extremities.

Are all your flares/attacks the same MO? Do they happen the same way for each person, or can they be different each time. Can you tell when you are going into one?

Thank you.

[tommylee]

Are all your flares/attacks the same MO? Do they happen the same way for each person, or can they be different each time. Can you tell when you are going into one?

Thank you.

What you describe sounds like problems caused by a lesion in the brain stem.
I have no medical training but the symptoms you describe sound familiar to my experience about 19 years ago.
It feels like being blasted out of my mind drunk but without the euphoria.
Or in other words clumsy, sick, in pain, staggering and not sure if you are going to puke or soil your pants??? I know what that feels like.

A round of steroids may help?
Otherwise if it does not go away you could try physical therapy to help you deal with it.
Seems to have helped me.

Try not to let it scare you. Being nervous seems to make it worse. (in my case anyway)

[sayccrn]

Thank you, TommyLee

Thank you, Yup, pretty much sums it up, a drunken flu type thing! LOL

Now that you mention it, I did almost pee myself today, and my bladder wasn't even full. And that reminded that was also the case when this happened the first time. The crazy neuro doc told me that I had too many symptoms, and blamed them all on my fibro and Hashi's, (which I've had for 16 years and never had these symptoms). But I can if it's a brain stem lesion acting up? Interesting.

Nope, not nervous, just want it to be so the powers that be can see it and properly diagnosis me!

Thanks so much.

[22cyclist]

1. Are all your flares/attacks the same MO? Do they happen the same way for each person, or can they be different each time. Can you tell when you are going into one?


Not all of my attacks or most any MSer's the same. They may happen the same way, or different ways each time depending on which lesion they are coming from. Sometimes yes, sometimes no. Sometimes you wake up with the symptoms and are in a full blown episode, no buildup. It just depends. Sometimes its just a symptom no buildup to a larger exacerbation so no worries. That is why MS is so hard to pin down sometimes, its unpredictable.

You don't have to have a brainstem lesion for these symptoms, lesions in your cerebellum will also produce symptoms like these as well. Honestly, any lesion in either hemisphere can cause you to be off balance because it can pull you toward that lesion hence making you off-balance. The tingling can be produced by a brain lesion or a cord lesion. However since you have them all together its probably coming from the brain.

Perhaps you need to see an ophthalmologist for your eye pain. There may be something else going on there then just an exacerbation. You may have ON, or some other eye problem related to MS.

I hope you start feeling better soon. Give your ophthalmologist a call, and then give your neurologist a call. Just because you walking is the same is no reason not to call. You have other symptoms that have lasted >24 hours, then it is the time to call.

Take care and let us know how it goes, OK?
Lisa
Moderation Team

[sayccrn]

Thank you.

I don't have my nuero eye appointment, (first one) til Feb, at this second it's gone, but was there all day today. It's so weird.

I'm kind of afraid to go back to the neuro if I am not any worse than what he saw the last time. To him, it's no change, even though I got better, even more after I saw him, and am now back to what I was (maybe a tad less-hard to tell exactly) when I saw him. So, to him there is no change. I guess I can wait a few more days to be sure?

I'm also just noticing now too, as I sit here and type. My balance even sitting is not right. Looking down at the keyboard then up at the screen I wobble. Do any of you do this too? It's so hard to tell, is it my eyes, my ears my brain, all three? LOL

[sayccrn]

update from late last night symptom

I posted this in the eye thread, and am posting it here too, since I just started this one yesterday and it's probably connected to my increasing symptoms.

Now this is weird and strange and I'm not sure if it technically 'counts' as ON. But this is what happened. It was late last night, I was saying good night to my daughter. All the lights were out but hers, so it was dark. I didn't look at the light, just reached up and pulled the string like I always did for the past 14 years.

So, I pulled the string and went to walk out. "OMG it is really dark! What?..wait now?..I cannot see out of my right eye!?"

I covered my right eye and I could see with my left eye, it was dark, but I could see things, I uncovered the right eye, nothing, major blackness, splotchy, but mostly on the left field with a splotch of light then another dark. Almost like the pattern on a cow. I stood there, blinking fiercely. It was as if my rods and cones were severely delayed, and were slowly catching up to the rods and cones in my left eye.

When it started to catch up, I was testing my eyes by covering and uncovering each eye to compare, the right one could see, but it was darker like the contrast was turned down. It only lasted a few minutes, and no pain whatsoever. As a matter of fact it had been my left eye that was hurting me mostly all day with sporadic right eye pain.

I seem fine this morning, well not fine, but not like that. IDK, if there is a little black splotch stil, but it seems to be there when I blink. You know, like if you are driving and the sun is in your eyes, and you see it afterwards for a while when you blink.

Any ideas on what this 'episode' was and what the heck should I do? If my neuro cannot see it and my Eye doctor cannot see me til Feb. What now?

Thanks so much.

[onlyairfare]

I would call my ophthalmologist if I were having significant visual change, and I would hope he would want to see me promptly in his office (like that day or the next) for an exam to evaluate the problem.

There are many other eye problems to consider besides ON, and they might require some specific treatment.

[sayccrn]

I haven't seen him for the first time yet. My first appointment is in Feb. That's the earliest they can see me as a new patient.

[onlyairfare]

What about seeing your family doctor real soon, then having him/her get you an eye referral ASAP if he/she thinks it could need ophthalmological care?

Or - many optometrists are readily available and can do a basic eye exam, then they too could get you into the ophthalmologist's office more quickly if they thought you had an eye disease that needed immediate specialty care.

Optic neuritis will usually recover or not, regardless of treatment, though the symptoms will improve faster with treatment. But if there is something else going on with your eyes, early treatment could make a difference.

[aspen]

saccryn ... I have had that night blindness thing in my bad eye. It would take about half an hour for my eye to gain sight each time. It lasted for about a month, but I had VEP's done after that and whatever it was, it wasn't ON. I also had pallinopsia (afterimages in my visual field with eyes open) and some other weird visual stuff ... still not explained, but not ON.

[newbie but goodie]

Can you try another ophthalmologist? I called one as a new patient, said I could not see out of one eye and was in pain, and had an appointment the next day.

Even just an optometrist can screen you for other issues and help get you in the door of a busy ophthalmologist practice. Keep trying, your eyes are nothing to fool around with!