Pass the cheese...
 

I couldn't find a recent 'whine' thread so here's a new one.

Don't you just hate it when you turn in at the end of the day, with the body feeling relatively OK...only to awake a few hours later like it has been in a bad fight...with an alligator or two?

I honestly don't get it. Things were feeling "relatively" fine last night and only a few of the usual Sx, but severe leg spasms woke me up...or should I say my own voice moaning did.
The first words out of my mouth were "Holy****, where's the Baclofen?"

Did I forget to take it last night before turning in? No.
Yet, the body is spastic as all get out this morning, the hand joints are on fire, my head is pounding and there's a foul mood going on that isn't welcome to boot.

I sure hope that the MS neuro comes up with something tomorrow, because I'm about done with this roller coaster ride.

Cheese? I think that I could eat the whole platter...and down a bottle of wine along with it :eek:

With love, "The Crank"

OK...the mood is lifting... but man, for a while there, I was creeping myself out :).
Thanks for a place to vent.

With love, Erika

Hey Erika....boy do I sympathize with you on that. I've been up before 4:00 a.m. three nights in a row. Not muscle spasms tho....I'm so sorry you are having that much pain. Its exhausting trying to figure out which drug when and how much. Anyway, hope the Dr appointment brings something useful to light! take care of yourself
love
janet

(((Erika))) spasms are the worst symptom, IMHO…makes me miss Dr. Kevorkian…I never understood why MS patients were his number one patients…until my pain began. Makes me want to leave the planet, but then I wouldn't want to do that to my family.

Hope you're not getting the virus going around-it has symptoms that are flu-like.
But it sounds like all of your auto-immune enemies are ganging up on you…hope it all quiets down soon and leaves you feeling better...

I haven't had to whine lately, but I will be happy to join you in yours,
out oF sympathy and empathy for and with you..:hissyfit:

Feel better soon please..:hug:

I'm so doped up on Baclofen right now that I think that mistook one of my socks for a bun and ate it for lunch :D
Otherwise at least the spasms have settled down and the fingers have too.
Now for the headache...Hmmmm. I'm about ready to stick it under a cold tap and just let it freeze off.

I'm sort of wondering if it is a virus too.
There are a lot of sickies around these days and I did go into a grocery store the other day to pick up a few things. Looks like I may have picked up something that wasn't on my list. And I'm so careful about hand washing etc. I even wash or change the packages that products come in.

With love, Erika

I've never had worse pain in my life than the muscle spasms of my inner thighs. Not childbirth, not migraines, not surgery. I was scared to go to sleep. The quinine was working, but then they outlawed it. I'm taking baclofen now, and haven't had one of those bad spasms for quite a while, thank God.

they outlawed quinine? When did that happen?

I know that there's quinine in tonic water. We had a contractor once that worked on something at our house, and one of the things he asked for when we hired him, was to have some tonic water available for him. Apparently he'd gotten malaria somewhere (he might have been a Vietnam vet) and he drank the tonic water to help the symptoms of that, if I remember right, the symptoms of the malaria could be triggered by hot temperatures. Kind of like MS symptoms being triggered by increased temperatures.

Erika, high amounts of baclofen can cause headaches? I've had a monster headache all day. Wonder if it's from the increased dosage…I hate headaches almost as much as spasticity..

It gave me headaches too. The main reason I quit it.:)

Is that why my head hurts?? I take 3 baclofen a night. Don't use it during the day. I like to be awake during the day.

Yeah, sometimes it gives me a headache, but more dizziness and weakness if I take a high dose...or should I say a high enough dose to knock out some of the severe spasms that get going in the legs. Its a trade off...and I'd rather have the dizziness and weakness.

I woke up with this stupid headache though, so it wasn't likely the Baclofen. I've been alternating between laying with my head and neck propped up, stretching my legs and neck, and sitting outside in the icy cold air (that helps relieve the headache the best), for most of the day.
I don't have a fever, but my brain and eyes feel hot from the inside... KWIM?

With love, Erika

I had a bit of a break from some of the spasticity for the past couple of days, which I'm sure isn't going to last.

I had a dose pack of oral prednisone (methylprednisilone 4mg...about 6 days worth) Ironically enough, not for the MS, but for a shoulder injury. I think I tore my rotator cuff about a month ago. Pain had been steadily getting worse. To the point that I couldn't do anything at all because it hurt so bad. I can't take narcotics because they make me throw up. So they gave me the oral pred.

It helped the shoulder pain more than anything MSish. I have two doses left. One pill tonight, and another one tomorrow and then I'm done. The shoulder pain is already starting to come back. Just waiting for the MS symptoms to start acting like they're mad too.

I think I'll be upping the baclofen in the next couple of days. Not really thrilled with that idea. I hate spasticity.

My only whine lately is that my legs are so cold.

Why does the pharmacy run out of the meds I need? Why do I continue to use that pharmacy? Today I need to call around to get my Vyvanse refill on my lunch so I'll have it tomorrow. It will be perfect if Target has it because they are next to my work location. If so, they will be my new pharmacy I guess and hope they'll be able to stock it or have 30 pills when I need a refill.

Erin,
30 mg of Baclofen isn't too high of a dose if the body is used to it, although as you know, everyone is different. It might make some symptoms like fatigue, blurred vision, weakness, dizziness...and headaches worse. If I take a higher than normal dose, that's what it does to me; but I haven't noticed an association with headaches with it.

Doydie,
I'm wondering if the circulation in your legs may not be the best if they are cold like that. It could also be why riding the bike at the gym is causing some problems, like you mention in another thread.

Although heat is not a friend, I wear a light pair of long underwear under my track pants in the winter; even in the house, because I keep my indoor temperature between 55 & 60 F. The combination of low ambient temperature and the underwear helps to control some of the above mentioned symptoms and seems to take the edge off the neuropathic pain & foot numbness that I get in the lower legs.

Thankfully the headache has backed off quite a bit this morning and I got some good sleep in last night without the severe spasms waking me up. I was almost afraid to go to sleep, so it was really nice that they left me alone last night.
I do feel like I have a virus cooking though...sort of nauseated, dizzy and vision is fading in and out, but that might also be the Baclofen.

I'm hoping that everything settles down by this afternoon because one of the clinic associates is coming over so that I can help her set up her business bookkeeping and on-line billing.
When I can't go to work, work comes to me. Its a nice perk of being self employed :winky:.

With love, Erika

Erika there's a nasty virus going around-it starts off flu-like but is really a bad cold. The cough lasts for weeks afterwards…hope you feel better soon:hug:

My neuro told me I could take more than 80 mg of baclofen per day if needed. But he wanted my legs to be "al dente", not like a wet noodle where I wouldn't be able to walk. It was up to me.
He actually told me to take it every 2 hours so it's constantly in my system. So I did that yesterday and the spasms were much less intense. Sounds as if this continues I might wonder if I'm a candidate for a baclofen pump.

I agree with you that Doydie might have circulation problems in legs-better have that checked. When I begin exercising, my legs hurt from the spasms for about 4 minutes; then they ease up and I'm fine for the rest of the workout. The activity gives the muscles something to do besides be a bother;)

Pain after beginning a workout is thought to be from peripheral circulation problems…my leg blood vessels were checked when I was in the heart hospital and they passed with flying colors, as did my heart in an angiogram.

Pain can be such a bugger to figure out, especially when we have MS…some docs seem to throw the symptom into that can and not hunt for another cause. That's why we need to be educated health care consumers.

Uh oh, my insurance denied the RX of Vyvanse and they need pre-approval so I might be without if for awhile. :eek: I still have some Adderall XR left but Vyvanse works so much better. I hope they'll eventually approve it! :eek: It is apparently not on their list of approved meds for MS fatigue. :confused:

I'm sorry to hear that Wiz.

I ran into the same sort of thing here. Why is it that the meds that we need aren't covered...and are the most expensive? Oh...never mind. I think that I just answered my own question.

With love, Erika

I'm so darn sick and tired of the insurance companies practicing medicine.:mad:

I'm tired of all the politicians practicing medicine too. (not making a political statement, other than the fact that I hate all politicians. They all lie, and they're only politicians for the money)

My insurance got dropped. Lost my doctor(s). And the new insurance deductible is so high, I don't know how they call it insurance. I'm in the middle of what is probably the worst ever flare that I've had. (can't walk without either a walker or a cane...about to ditch the cane for some forearm crutches to see if that would be easier. I can't drive my car that I just bought, so I probably wasted $19k on the car, and I'm quite peeved at the entire world right now)

oh, and I tore my left rotator cuff. yay me. :( (did a small dosepack of steroids for the pain. Steroids ended yesterday, and now my arm really really hurts again. Washing my hair just now was not fun)


anyone here know anything about hand controls for driving a car? Do I need lessons? a special license?

((((Erin))))

Sorry that you are going through a rough patch and that your insurance got canceled, and that you lost your doctor too.
Gee this new medical thing doesn't seem to be very good for a lot of people. I sure hope that they work the bugs out of it, so that those who really need coverage get it.

With love, Erika

I wish I could get cheaper insurance than what I ended up getting (new one doesn't cover the same stuff I had, but makes me pay for maternity stuff. I'm never having a kid. I don't need that) but I'm not touching that website with ten foot long keyboard to see what they have to offer. They have no security set up on it. (why?) No way I'm entering my info into their system.

I was probably in the first wave of insurance droppings, before it started to hit the news (it was probably late August)

Right now, I'm more bummed out by the stupid flare bugging me, and not being able to drive my car. I need to find out how to get hand controls installed, and if I need lessons and a special license to drive with the hand controls. I want to be able to drive my car. I'm going bleeping nuts trapped inside my house. I never go anywhere. It's no wonder all my muscles are getting deconditioned. Which I think has something to do with the fact that I'm having serious issues with the walking, and my balance.

Just wish the weird sensations, the weird walking and the feeling sick and tired all the time would go away and I could be normal again. That's not going to happen tho.

Has me wondering why I always seem to be having a big flare over holidays. I love Christmas, but the more I want to do anything for Christmas, the worse I feel MS-wise.

I can't even get my trees out of the closet. (I have 3) I'd love to do my designer tree (I have a huge collection of patriotic ornaments I've been collecting) but it's too much work to put all the ornaments up. So, I've got my two lazy trees. The ones that are pre-lit and I don't bother putting ornaments on them. I just can't get the lazy trees out of the closet either.

My dad told me what he's getting me for Christmas last night. Told me I could go ahead and order it myself whenever I want to, and I could have it before Christmas. (it's a gadget) So, at least that part of Christmas is going to be exciting. My dad is trying to keep me from being bored out of my mind from being sick all the time.

You have a Wonderful supportive Pop, Erin.:hug:

Arrgghhh…the knee surgeon's pcp's nurse called today. Said that the tests showed I had/have a UTI and I need to go on ABs asap and have a urine culture done next Friday-which is when our Christgiving is in full swing.
I wonder if the spirits are telling me to delay this surgery…with the spasms, and now this, I feel a bit of trepidation now that I didn't feel before. The reisk of infection with knee replacement is huge, and DH and I are subconsciously worried.

I have almost chronic UTIs…is this normal in a person with MS who is fastidious with hygiene?

Yes Debbie UTIs are almost normal with peeps who retain urine
...us MSers.:mad: I actually wash myself with soap and water every
time I go potty and squeese my bladder and yet, at least, twice
per year, I'll get a UTI.:eek::mad:

Skip the operation until after the holidays and get yourself well.:hug:

Debbie,

You need to slow down, one step at a time girl! Go easy on the housework, the kids are not going to notice dust! Let your DH finish the cleaning after he finishes the floor.

Make sure you are infection free and not stressed before going into surgery, you don't want to do something like I did and push yourself too hard before surgery and having a relapse! :rolleyes: :o

I am kicking myself with the walking problems I'm having. I'm praying they are temporary.

Please take it easy and enjoy the holidays and put off your surgery if you can. :hug:

yep. My dad is the coolest. I need to get him something really cool for Christmas. I just can't think of anything that I can surprise him with on Christmas. The gift he's getting me is, you guessed it, a new iPad. (the iPad Air) and we talked about it last night. He's going to take my iPad3, my mom gets his iPad2 (yay! mom gets her first iPad!).

I hadn't even thought seriously of getting the new iPad. I think my dad just likes to buy gadgets. I also think he wanted to do the iPad shuffle so that my mom would finally get one. She's been asking for one.

My dad deserves a really good present this year. I just don't know what to get him. I also don't know what to get my mom. Maybe new covers for the iPads that are getting passed down?

My dad is great, he's been super helpful with helping me with a lot of stuff with this MS. He also told me today that he'd get me hand controls for my car. So I'll be able to drive. Which means I'll be learning to drive hand controls in the winter. This is probably a good thing. They can teach me how to drive on snow...something I can't do with a normal automatic car anyways. I've only ever had stick shift cars. I don't know how an automatic car handles on snow. I'm used to being able to down shift.

My dad damaged my new car this morning. He scraped the mirror off of a parked car this morning, and put a huge scratch down the passenger side of my car. :mad::mad::mad::mad::mad::mad::mad::mad:

I didn't know about it till later this afternoon. My parents were out earlier today, and that's when it happened. Apparently my dad called my insurance agent (same as his) and reported it. The owner of the other car was nowhere nearby. My dad would have just left, but they were stopping at a store right in front of where he damaged the car. My mom went inside to pick up something she'd ordered, and while she was in there, she confessed. (that's how my dad put it)

So, my dad had to leave insurance information. Hopefully not MY name, because it was my dad that did it. I was home sleeping because I had insomnia till 8am.

I found out about it when I got an email from the insurance company telling me they'd gotten a call about "my" accident. I was like "what accident?". I was about to call the insurance company when my parents came home and dad had to confess to me that he'd damaged my car. (that I can't drive)

I think my dad is going to try to not have it fixed. Hah! He's gonna get it fixed. Then he's getting me hand controls for the car, and I'm taking the keys away from him.

Erin,
Accidents happen...sometimes all too easily. That's why we have insurance.
I'm sure that your Dad didn't do it intentionally. Its not as though he was speeding recklessly down the highway saying, "Lets see what this baby will do."

It might be better to extend some undersatanding and forgiveness in his direction. Even if it is only to ask him if he is OK.

Scratches in sheet metal can be repaired and remember, cars have no feelings.
Damage done to relationships, are not so easily repaired...the scrapes and dents seem to go deeper than outward appearances.

With love, Erika

It's just that the car is kind of a sore point to me. I'm not able to drive it right now. I had to give my old car away because it was a stick shift, and the person I gave it to never thanked me for giving them my car. I thanked my dad a lot for helping me get a new one. But, the person that I gave my old car to, couldn't be bothered? That's really kind of offended me that they didn't thank me for giving them a $7k car.

Then I can't drive this one. It's sitting right there. I can look at it, and sit in it if I want to (I don't. That would be depressing) but I can't drive it.

I used to be independent and able to hop into my car whenever I wanted to. Now I can't, and I have to look at the car every day, knowing I can't drive it. It just kind of hurts in a way that is hard to explain. (I've been stuck in my house for over a month, not able to get out unless my dad drives me somewhere. I'm probably a bit cabin-fevered and going out of my mind at the moment with boredom). I know I sound like a word that starts with the second letter of the alphabet, but I'm just kind of frustrated at everything that's gone on this year.

Even if my feet and legs weren't being all MS-ish at the moment, I probably still wouldn't be able to drive, since I screwed up my shoulder.

Just tired of being stuck at home all the time. I want to go out and do stuff without my parents.

Yeah, no doubt that your current situation is not only frustrating, but sounds painful too. Sorry about your shoulder.
It really does get hard to cope when it seems that everything has gone to pot at once...and then stays there.

Can you get out with a friend instead of your parents Erin? Or maybe have them drop you off at a mall or something so that you can be away from them for a while in a different environment.
Even if you just go to sit and people watch, I find that at this time of year, the :eek:s are pretty good. Better than TV in most cases.

With love, Erika

Can't really do stuff with my friends. They have actual lives and jobs and kids. (I say "they". I really only have one friend that has a kid. She's busy with her kid, and her job, and she's going to school).

I have a boyfriend, but I think he's been having a bad year. His job is overworking him, and he's got to deal with not having a lot of money. He lives in another city about 50miles from me, so he can't get here that often. I haven't been pressuring him to come here and entertain me, because I haven't felt all that great this year. I'd be a boring date. I'm a little embarrassed at how bad I feel, and I think my body has been changing because of the flare. Getting a little (ok, a lot) deconditioned. Things I could do several months ago are probably starting to get beyond me now.

I do feel a little bit like everyone has abandoned me, but I think that's probably just me feeling sorry for myself. But when you go week after week, and it turns into months where you don't talk to anyone, that gets really depressing. I got my hair cut about a month ago. While I was there, there was a guy there getting his hair cut. I ended up having a really great discussion about politics and what's going on with the world. This guy didn't treat me like I'm an idiot, and I was able to keep up with the conversation. It was great. I need people to talk to like that some more.

I know some people (family) look at me like I'm faking and lazy. That really bothers me. I don't see how a person can fake it. I was around a couple of family members the other day, and when I was talking to my dad with them around, they didn't do the greatest job of containing their facial expressions. Plus, the two of them kept texting/instant messaging each other on their phones. I could hear the chimes of the phones. Then I'd see one of them look at me, and they'd both share an eyeroll or scowl or something. I wasn't imagining that. My dad noticed it too.

I told my dad earlier this summer that I thought that we needed to build a ramp to get out our front door. Stupidly I did this in front of those relatives. They immediately started telling me I was crazy, and didn't need to do that. They got really nasty about it. Got bad enough that I just got up and left the room. It's annoying. I can feel all this weird stuff going on in my body, and can make the deduction about what's going to happen. I'd like to have things in place for when I need it. I didn't like those relatives dismissing me when I was trying to tell my dad what I need. (I think the ramp would be helpful for my parents too) The relatives that were yelling at me are able bodied, and a bit...narcissistic about things. I didn't like them telling me that I didn't need a ramp.

all of that is frustrating.

Gee, that is frustrating to have family members pass such judgments and to do it in such a way deserves the getting up and leaving their company.

In my world, texting while in the presence of others during a visiting situation is beyond rude and deserves that being brought to their attention. Mind you, I may be old fashioned in that respect, as that behavior seems to have become acceptable these days. Thus I said, in my world.

I have a couple of signs at my office that depict a cell phone with a red circle around it and a line running through the middle of it; indicating that use of such is not permitted in the clinic. One is on the entrance door and another is in the waiting area. There is another sign on my treatment session door that explicitly says, "Please turn off cell phones/ring tones." Yet, there are still those who do not get the message.
Honestly...very few people are needing to have them on during all hours. Even most doctors (when they are not on call), respect the signs when they come to the office.

I find it disheartening to hear them go off, because I know that the individual is then distracted. If they choose to respond to it, I remind them why we have made the request and then I leave the room while they engage the call.
Hey, its their $60.00 for every half hour of my time, and if they want to spend it chatting on the phone, that is their choice.


Although I wouldn't wish what we go through on anyone, it is sometimes very interesting to observe how some 'able-bodied' individuals deal with and complain about a temporary health issue, isn't it? Especially the ones who seem to have little understanding or compassion when it comes to others.

Erin,
Do you skype? Maybe you could skype with your boyfriend and/or even your friend. Sometimes that is easier than actually being together, and it could be beneficial to everyone.

I do understand the being cooped up for weeks on end as being rough. After a while (days not weeks for me), I feel like some of my brain cells, the ones that have to do with consciousness and thinking, have passed on :winky:.
Watching TED talks and doing some brain stimulation stuff like Lumosity on the computer helps, but sometimes the motivation and/or ability to that is lacking.
When I can't go out much, I come here (Notice that I've been here a lot lately?), send a few emails to people that I haven't chatted with in a while, take courses on line, design my next year's garden...anything to engage in something besides navel gazing and self focus. It helps. It really does.

Hope that you find an outlet or two that works for you. :hug::hug:

With love, Erika

yeah, I have Skype. I talked with the boyfriend on friday on Skype. Probably the only way I get to see him now...and his heat was kind of not working that night, so most of the time I talked to him, he was wearing a jacket with the hood up, and one of those ski mask hats that covers half the face. Pretty sure I could hear his teeth chattering. He just can't get online that often.

Just so frustrated with my health issues. Now I apparently have another. Without being too TMI here. I haven't done a certain thing since thursday. I took medicine for it, nothing happened. So, I took another medication (that's not taken orally) today, and still...nothing has happened. Getting really worried, and I really do not want to have that conversation with my doctor. My life just gets worse and worse.

Erin, really maddening about the car! It is so important to you. Hand controls will be great when you get them.
Baclofen, my reaction to one day's pills was to walk into a wall as if it was not even there.
Bull-in-china-closet. I could tell I would walk into other walls, after that, so I had to quit it. Tried Zanaflex then, made me wet-noodle weak. Magnesium was prescribed by Scripps Clinic neuro, problem improved dramatically. I wonder why magnesium doesn't help others on this forum? Or at least not many. It isn't a total cure for me any more. One thing I have to do for leg spasm is to rub the knots out. This takes a lot of effort and probably burns a lot of calories and strengthens my arms and hands. I only do it when I'm so desperate the adrenaline enables my weak arms to do it. But it does help. I have to keep rubbing for a long time--maybe twenty minutes? I don't time it, of course.
My other disease Polycythemia Vera made my itch exceedingly bad last night. Time to pray and weep. I must have got some help because I dozed off. Itch is a very common problem with PV, and it is much worse than you may imagine. So I was rubbing out the knots in my legs between compulsive scratching. Finally dragged myself up to put very thick cream on back and sides and abdomen to stop the itch. I use Badger Balm.

hey, that TMI problem that wasn't happening, just happened. yay. Now I feel a little better. I was about to panic.


I really cannot wait to get the hand controls for my car. I'm going to call the physiatrist's office tomorrow to find out where the classes are for learning to drive with the hand controls. and see if I have to have the car converted first, or if they have a training model of a car for me to learn on. I get the feeling I have to have the conversion done first.

Then once I can drive with the controls, I can take the car to the body shop to get the damage my dad did to the car fixed.

I managed to get one of those family members to help me today with changing lightbulbs in my bathroom when they stopped over today. I don't have to wash my hair in the dark anymore. It's amazing how stressful it can be to not be able to change a lightbulb by yourself.

my shoulder pain started to kick up again this morning tho. I hope that I won't need to have surgery on it. I go to an orthopedist later this week to have it checked out and see if I'm getting shoulder surgery for Christmas, or if I'm getting more PT instead. I'm just so exhausted from this past year being so fantastically crappy. Hurting my shoulder is just another annoyance to have to deal with. I wish my health would stop annoying me so much.

Sal, TMI here…I can sit on the toilet for 15 minutes and my bladder sphincter opens and shuts, opens and shuts…then I get in the shower and I make a shower:(:( I always think I'm finished, but it's never true...

I think the sphincter muscle is spasming; my neuro is really pushing me to go to a good urologist and get botox injections to stop the incontinence/off and on going. He feels it works for about 6 months and then I can get off of the med that is supposed to help incontinence, which dries out all of the mucous membranes. He suggested that that might be the reason I'm having such awful dental problems-dry mouth.

Erin, sorry your dad broke your car:(

I like Baby Bel cheese with my cabernet, thank you very much;)

I think my rear end is still broken (no, I'm not talking about the car)

Really do not want to have that conversation with my doctor...or my parents, since they're the ones paying my medical bills at the moment (and driving me around until I get the hand controls).

The difficulty that I'm still having is really disturbing. Part of the reason I'm afraid to go anywhere.

I'm just tired of feeling like carp all the time. I feel like some sort of autoimmune freak. I'm tired of swollen, painful body parts. I'm tired of getting so fatigued just taking a shower. I'm tired of doctors, blood tests, hospital visits, more medications, etc. This past month, I have taken a vacation from all doctors. I needed to do that because I honestly had at least one dr. appt a week for a while there. I see 7 specialists now and my PCP. :eek: It just gets to be too much.

I'm tired of having to pace myself and am terrible at it anyway. Once I start something I push until I have either finished it or my legs start to collapse. I try my best to pace myself but it's difficult to do sometimes. I just want to accomplish something with my day.

Passing the whine and cheese . . .