Eye doctor said that I *might* have ON, but that he didnt see anything weird in my optic nerve. (similar thing happened the first time I had ON. Changes in the optic nerve didnt show up for awhile) I had pain for a couple of weeks when I moved my eye, and a weird shimmer at the top of my vision. Now I kind of have a little bit of glittery "snow" in my vision sometimes, and some blurries, but it doesnt hurt anymore.

Went to the neuro, he didnt even do a neuro check on me. Just talked to me. Told me to go to my regular doctor and get checked out because I had a cold and The Hug + a cold was making me miserable. My back is really really stiff at about where the waistband of my jeans goes across my back, and my stomach down to a...personal area...has been numb. Neuro did say that I was in a flare, probably the same one that started in December, but said he didnt want to throw any more steroids at me. Asked me to deal with it. (oh...okay...dangit!) He told me that steroids dont always make the flare go away totally. Just lessens the symptoms some and that they can come back once the steroids wear off.

I read somewhere on the internet that being dehydrated can make some MS symptoms worse. I had a cold at the beginning of the week and was taking antihistamines (Mucinex) and was popping Baclofen and Valium like they were M&M's. I was constantly thirsty all week and was drinking pop instead of water. Couldnt seem to drink enough.

So, last night after I read that being dehydrated could make some symptoms of MS worse, I went out to the garage and dragged the case of bottled water into the house. Drank nearly 3 bottles last night before I went to bed. (surprisingly, I didnt have to go potty as much as I thought I would)

I must have been pretty dry. But, after the 2nd bottle (drank everything slowly over several hours) I actually started to feel a little better. My hands had been really numb and had this annoying tingle going on. I woke up this morning, and the tingle was gone and the numbness was better. My back still hurts and is still kind of numb, but a lot of the stiffness is MUCH better. I havent had any baclofen since about 4am. Not walking as funky as I was either.

I havent had any pop since last night. Today I only drank water, and I actually had a small amount of hot tea with dinner (went out for Chinese food) I hate tea, but I was so cold from having to put gas in my dad's car for him that I wanted the warmth.

I realized that I had a lot of edema again, kind of like I had last summer when I was taking Lyrica. I think all the sodium that's in pop and all the junky food I'd been eating recently must have got to me. I can tell that I'm still in a flare, but switching over to plain water and eating some asparagus (a very tasty natural diuretic) seems to have helped. I guess I didnt realize that you pretty much need to be hydrated enough for your nerves to work their best, and if you have nerves that arent working normally, if you're dehydrated that might make already misfiring nerves screw up more.

My cold let up, so now that I'm not taking all the cold medicine, and the spasticity seems to have calmed down I'm feeling a little better. Wish the ball of spasticity in my back would hurry up and go away, but at least that feels better now too. I was able to stand up and un-decorate my Xmas tree today. I even went to WalMart today with my parents. (had to keep sitting down. Yay for Walmart putting benches in Action Alley, that area where they put the dump tables for stuff that's on special)

My dad and I are going to go to the gym tomorrow and try to do a little recumbent bike exercising. My dad doesnt have a cold. His cough is probably from either his heart condition (I hope not!) or his asthma. My mom had a cold earlier this week for about a day. (that's just not fair. She never gets sick and when she does, she's better in about a day or two) My dad is living in fear that he's going to get the cold that my mom and I had. Hopefully he wont.

My sister was going to come over this week with my nieces. We told them that we had colds, and that my dad had a staph infection in his index finger. (that's been healed for about a week) and that was enough to keep my sister away. Good thing she didnt come over. My niece was in the ER last night getting diagnosed with walking pneumonia! (the contagious kind!) She had a 105 degree temp! My dad basically quarantined us. Told her NOT to come over till the kid is better and they're sure that no one else in their house is going to come down with it. Hopefully the rugrat wont be sick too long. I remember my sister had walking pneumonia when she was about the same age (9 or 10yrs old) and was down about two weeks.

Now I'm just hoping to get thru winter without slipping on the ice (again) I slipped a few weeks ago while putting salt on the driveway. Which may actually explain some of the back problem. Neuro told me that I could have strained/sprained something and that could exacerbate whatever is in my back that was causing me to drunk walk around Xmas. (pretty sure it was one of my spinal lesions that was mad at me)

I get to go see the regular doctor next week to get the stuff that the neuro wanted me to get checked out, and I'm planning on asking for physical therapy for the stuff from the flare I had around Xmas (drunk walking, balance issues) and for the back problem. I want them to show me the correct stretching exercises to see if I can get my back to loosen up some more. I'm going to get kvetched at by the regular doctor because the 'roids I took in December made me gain weight. My neuro already kvetched at me for that too. I figure the physical therapy might help with that along with going to the gym with my dad.

I just cant wait for winter to end and for the snow to melt. Trying to walk on ice and snow when you can barely walk normally across flat, dry carpeting really sucks. Plus it feels like MS symptoms are more annoying in the winter.

My feet have been burning for a few hours, I feel really sick, and my back at the spot where it's been numb and kind of hurting is really burning, like someone is poking me with a branding iron. Owwwwwwwwwwwwwwww!

I dont know if I'm feeling sick because I backed off on the valium and I kind of hadnt any baclofen since about this time saturday morning. Now I cant sleep.

I took half a valium just in case that was my problem. (was only taking one pill a day, for maybe a week...it was pretty much the baclofen I was popping like TicTacs)

Now I cant sleep because of the back pain. I'm tired and I've been watching the news about Egypt and I'm worried sick that the rioters are going to try to get into the museums in Cairo and start vandalizing and looting Egypt's history. (one of my favorite things to read about is Ancient Egyptian history) Looters already got into one of the museums once today, destroyed a couple of mummies and looted a small amount of items. (idiots. They should be protecting their history...which some people did. They formed a human shield around the museum and kicked the looters out)

I just had to look up to see where the Tutankhamun exhibition is. (apparently it's in New York! Maybe? Looked up the exhibit and it doesnt specifically say that Tut is there, but that there are artifacts from his tomb) I dont want to see that looted or destroyed. I want to see it some day!

I'm going to go lay down (ok, sleep sitting up) and see if my baclofen kicks in. Maybe I did too much today? (went to walmart) I hate feeling sick and watching what's going on in Egypt is freaking me out and making me feel a different kind of sick. I dont want to see things there go insane and watch them destroy all that work to preserve and learn about their history.

http://www.kingtut.org/about_the_exhibition

Erin, I hope you feel better and get some good sleep. You sure are a great typist. Wow I'm impressed.

I took typing classes in high school. (manual and electric, back in the mid-80s) One of the few classes that year that I got an A in.

Then I took a bunch of classes at a community college to be a medical transcriptionist...just before the MS kicked in at high gear. We had contests in the keyboarding classes to see who could type the fastest. I was third fastest, but had the best accuracy. Last year when my hands went numb and my pinky fingers could barely move depressed me so much. I love to type and write a little. My handwriting has always sucked, but my typing is usually pretty good. It was like having someone gag me.

Now I do typing tests on the internet for fun and as a way to try to keep my fingers moving (along with crocheting and knitting) I'm not as accurate as I used to be. My eyes get lost in the text that I'm typing from more often now.

I may still try to get my medical transcription certificate. If the MS would leave me alone long enough to finish the classes.

Glad you are better hydrated. Dehydration can really mess with you. Your body needs water to operate properly. Smart of you to figure that out.


Feel better!

woke up this morning feeling dry as a desert. Everything numb. Guess I shouldnt have decided to suck down a couple of bottles of Coke last night instead of H20.

I've finished one bottle of water for breakfast/lunch (havent eaten yet today) and feeling a little better. I guess I'm going to start saving money by not buying pop as often anymore.

It's winter now, and snowing outside. I guess the humidity must not be very high and it's drying me out.

I hope you feel better, Erin. Most certainly water is much better to be drinking than Sodas... I switched to red grape juice over a year ago. water it down some so get a good vitamin packed juice and water all in one.

hugs & love,

I think I just figured out what part of this is...and I want to beat my head against the wall that it took me so long to recognize the symptom.

When I had steroids in 2009, I had a bit of edema for a few months after I was done with them. Had to do a lot of exercising (treadmill walking mostly) to help that go away. I'm really wondering if this is edema again. Feels like it!


Last summer, after having steroids I again had a bunch of edema, also made worse from the neurontin that I was taking back then. (neurontin makes my feet swell up) Later last summer, I was taking lyrica (which is chemically similar to neurontin) and my whole body swelled up with edema. It was pretty strong right at the small of my back where I've got it now.

I did steroids just before Xmas (oral) and I'm now starting to wonder if this is leftover edema from having the steroids. My feet have been swollen since around the time I was taking the steroids, and now I'm wondering if the fact that I feel like I did when I was taking lyrica (full body puffiness and some weird feeling numbness that doesnt quite feel the same as when the MS makes me numb) would be the edema getting worse because I havent done anything to help the swelling the steroids give me to move along and it's gotten worse and moved up to my low back.

I've been drinking my water, and that seems to helping some, but I still feel...full. Left ankle is pretty chunky. I think I'm going to start exercising at the gym tomorrow (recumbent bike) and see if I can get my doctor to see me sooner than his nurse said I could.

I've had this happen a couple of times now, you'd think I'd recognize the signs instead of immediately leaping at the MS excuse.

The thing that made me realize tonight that it's probably edema is the pain around the left thigh that I've got right now. When that got really bad back when I had the edema from the lyrica, it was the biggest clue I had a problem.

Since we had a snowpocalypse and an icemageddon the past couple of days and the wind is blowing so hard we have snow-nadoes swirling around in the street I cant exactly go outside and walk it off. I started walking in place some tonight, and climbing up and down the stairs and putting my feet up. I think I need to get my doctor involved on this one.

I hope that there isnt any other medication involved in this. Anyone know if baclofen or valium can cause edema?

You say you've been "popping" baclofen and valium like M and M's. If it were me doing that, I'd have the spasticity in my back and the MS hug type of pressure you describe. But of course I have Porphyria which makes me sensitive to those drugs--it is quite possible you are also sensitive to them whether or not you have Porphyria. You also react badly to steroids and Lyrica, as I did. All of these drugs would make me very spastic and Lyrica would give me the "hug" in spades.

I just wish you could get off some of these drugs. I don't mean ALL drugs, but somehow you may be taking more than you need and they may giving you side effects.
My worst symptom up until recently has been spasticity, and these drugs give me that.

I take Klonopin in very small dose, to which I react entirely better than to Valium. Perhaps a change to Klonopin, a different drug of the same class, would help. It helps spasticity and shakiness. I would also take some magnesium, calcium (at a different time than the magnesium) and some Vitamin D3. The magnesium was recommended to me by a neuro when I could not take Baclofen, to ease spasticity and jerkiness. And it worked. I take 900 mg a day, a large dose, in two doses.

The burning feet has been my recent bug-a-boo, too, neuropathy. I have no cure for that except time.

May you soon find coordination and peace.

Mariel

I backed off on the valium. The Rx is not very big (25 pills) and I dont want to get hooked on it. I've only been taking that if the spasticity starts to hurt.

I'm trying to back off the baclofen a little bit. Trying to only take it at night when I sleep, instead of taking it on a schedule during the day. I talked to my aunt (a nurse practitioner) tonight and she told me that she thinks some of my problems (the sensation of edema, and maybe even the insomnia) is from the oral pred that I was taking just before Xmas. Which kind of makes sense. That crap sticks around for awhile.

She also reminded me that edema can make numbness feel worse. Which might explain the extra numbness. (I'm drinking water to make myself get rid of extra salt)

Everything has been freaking me out for the past couple of months. Talking to my aunt helped. She's a great nurse...and I think she knows more about the meds I'm taking than the doctors who are prescribing them to me.

I managed to eat dinner tonight (yummy gyros! Mmmm!) and it didnt make me feel sick when I was done. Lately everything I eat has made me feel sick. I did have a weird sensation in my stomach that felt like spasticity and a serious fullness sensation about a half hour after I was done. My aunt said that was probably just the spasticity and the heat of the food, she didnt think it was my stomach not working. (asked me questions about things and determined that my stomach is working fine, among other things )

I am still not used to having the MS, this year has been the worst because I've had the worst flares (and the most flares) this year. I'm tending to panic about everything because I still dont understand it all and its still kind of new even tho I've been diagnosed since 2007. (My diagnosis anniversary is in 4 days)

I'm still stiff, still sore, still have weak legs and am really really tired, and still walking funny, but some of the sick sensation seems to have let up after talking to my aunt. I'm really really glad she lives across the street from me and that she's a nurse.

I think the fact that my neuro told me that he didnt know what to do with me kind of stressed me out and annoyed me a little bit. Told me that today when he suggested another neuro. I'm considering going to the other neuro. Kind of hoping I'll find a neuro here in town who is willing to Rx LDN, or have me checked CCSVI. If I switch, I'll probably hold off for a few appointments before I start asking about that stuff.

I think I might be able to sleep tonight, so I'm going to go attempt it. Hope it works, I'm tired of falling asleep every time I sit down at my computer to do anything or just whenever I sit down.