I suddenly feel disabled.
 

My flare that started out in late April that seemed to only affect my legs seems to have taken on a new life of it's own.

I had steroids (IVSM and a taper) in May that seemed to work. The numbness seemed to back off for a couple of weeks.

About nearly two weeks ago, I woke up and I had numbness again, from around my waist and down to my feet. My left hand (which has been varying degrees of numbness since last fall) seems to have started to get more and more numb, and that numbness seems to have moved to my shoulder and down my ribcage and joined up with the numbness around my waist.

When I stand up, sometimes I feel like I'm about to fall. (no falls yet) My right hand is starting to go numb now, and I'm having problems crocheting and knitting. (that's probably what disturbs me the most)

I have some fairly serious pain in my neck coming from my left shoulder, and it's causing my neck to hurt all the way up behind my left ear. That pain also seems to be on the right side of my neck, just not quite as painful as the left.

I dont feel good. Walking across my bedroom to the bathroom seems to suck all my energy. I feel sick all the time. I'm so tired that not even 12hrs of sleep helps.

I'm really disappointed that this flare seems to have kindled itself back into life after the steroids. It's really starting to scare me. I dont like this feeling and I want it to go away.

Kind of irritated that when I saw my neuro a couple of days after the symptoms started back up, that he didnt even do a neuro check on me, and pretty much blew me off when I told him the symptoms felt like they were coming back.

Hopefully my regular doctor will take me more seriously when I see him on monday. (he's the one who Rx the IVSM to me, after my neuro asked him to do the set up and follow up on the steroids, since my neuro seems to take several weeks a month off...every month. In neuro's defense, he's older and not well himself)

It sounds like MS may be trying to take a stronger hold on you..:mad: I am so sorry. Try to relax and go with the flow, as much as possible. Getting yourself in a panic state is not helping.

I hope this flare will go away soon..:hug:

I think it's causing me to be in a bad mood now.

I went upstairs, and my niece had left the recliner that has the fancy lift function in it (lifts people out of their chair) in the reclined position. She climbed out of the chair and left it that way. I got a bit...irritated at that, and put it in a normal position and then removed the control from it. I'm still waiting to see if I get kvetched at for it. (they came over for dinner, cooked food I'm allergic to and didnt ask me if I was hungry. Everyone is up stairs eating and I'm down here starving to death)

My head hurts, my neck is killing me, whatever I did to it...it feels like my neck did when I lifted something last fall and pinched a nerve in my neck..except when I did that last fall, it was the other side of my neck.

I'm tired, and hungry and no one in my house bothered to ask me if I'm hungry, and then they cooked (sea)food I'm allergic to and I think that's causing me to have an allergic reaction. (started itching a minute or two after I went upstairs.)

This MS is really really starting to tick me off, since I feel like no one in my family seems to give a crap about it. They're probably about to think that the MS is making me crazy. (probably true)

I think I'm just a bit (hurt, irritated, annoyed) that my dad would forget that I'm allergic to seafood and let my brother-in-law cook a meal that I cant eat and that being around the steam from said food being cooked can give me an allergic reaction. The food smells good, which is making me really hungry and I cant drive to get out of the house and go get something to eat that wont potentially kill me. (that's the other thing making me feel disabled, feet that are numb that make me scared to try to drive my stick shift car)

Baby, come here and sit on Momma's lap...that's a good baby. I know that ole MS is causing all this rukkus on ya right now. Those ole nasty roids don't help when they jump in to make a person feel like The Hulk either.

You just sit here and let Momma hug ya good and tight until you feel better, and you know how Dad's can be...they tend to be a lil forgetful. Ya grandpappy can't remember I graduated from that fancy college, but he remembers ya Uncle Billy Bubba graduatin High School.lol Yeah, ya grandpappy has that selective memory right enough.

It'll be alright baby, maybe it won't last long, and ifn it does...we'll be right here. Let's make this ole swing move cause it ain't no rainy night in Georgia, its hotter n a pepper sprout...:hug::hug:

I hope you feel better soon, I have been battlin a flare since last year...just had two days of infusions a few weeks ago. I do declare it is enough to make the devil pray.lol

Erin don't you have a boyfriend? I thought you mentioned that. Could you call him and ask him to bring some take-out in? Or can you call one that delivers. Heck, I'd call upstairs and tell them to make me a sandwich and bring it down. :D

Erin I would get another Neuro. Yours is not helping you and not available enough to you. There is also the possibility that the numbness may be residual damage if you have it a long time. Numbness can stay as long as you are not totally numb and can't walk. It comes and goes for many, or stays for a long time.

I hope tomorrow is a better day for you. Go up and raid the refrigerator. :hug:

My boyfriend lives in another town 50 miles from here, and he works constantly, trying to get his head above water since the economy monster hit him (his dad closed their store, and he's been working jobs that dont pay enough since then)

I had my steroids at the beginning of may (3 days IVSM, and 2weeks of tapered prednisone) The 'roids seemed to work for about two weeks, and then BOOM! the symptoms came back.

I really hope that doesnt mean that the steroids failed.

Today, I've been noticing weakness in my left hand. It kind of feels like it's sprained, and numb. I was eating dinner (finally! went to Carraba's and got some lasagna, chicken Parmesan and spaghetti...and some bread with oil and herb mix and some minestrone soup. Saved the minestrone for tomorrow's lunch) I noticed that my left hand felt weird when I was eating. I cut meat with my right hand and eat with my left...my hand felt strange, and I felt like I was having problems controlling the fork. I'm an ambidextrous eater, so I switched to the right. Fork felt weird there too, but not as much as with the left hand.

My hands feel slick. Anything that I pick up that's smooth feels like it's going to slide right out of my hand.

My left shoulder feels extremely stiff now. It hurts to raise my arm up above the shoulder. Shoulder keeps wanting to pop out of joint. (I'm double jointed in the shoulders...can usually painlessly pop them in and out of joint whenever I want to...just hurts too much to do now)

I'm really annoyed with the numb hand right now, because it seems like some of my dexterity is affected. I just bought $50 in new knitting needles from Knitpicks.com and I'm having such a problem knitting with that hand. Just got those needles today, and it's bugging me that I cant really use them. I did do a little knitting with some scrap to try one of them out, but it was really difficult to do.

I hope I didnt just waste $50 (and I hope this numbness resolves so I can knit and crochet again!!! That's my stress reliever)

My neck is hurting like it did when I hurt my neck last fall, so I'm wondering if this numbness is from that neck injury. I think I re-injured my neck, or maybe the MS is irritating that injury. (or the injury is irritating the MS?) Or it's just the MS trolls in my head being ***h**** screwing around with me.

My sister and her family finally left to go back to their house and I could finally relax. (when they come over, they literally take over the place and even tho she's family, I cant relax with them around...especially when I feel like crap like I do now)

My dad told me that my niece came to him, wondering where the control to the lifting recliner went. She wanted it back. Luckily he was actually happy that I stole the control, and told her that she didnt need it. (she wanted to sit and raise the chair up and down and up and down and up and down and up and down. I dont think we ever told her the chair on the glassed in deck does that...otherwise she'd have been out there too) So I didnt get kvetched at for stealing the control to the chair. Yay!

Dear Erin,

I've read this entire thread twice just to make sure I understand your circumstances. I have great empathy and sympathy for your physical symptoms and I'm fully aware they affect every aspect of one's life. I don't believe the "physical" game is what's hitting you the hardest. It is the game going one between your ears which is the major challenge.

Ironically, the game between the ears is the only game we have total control. What I am about to share may not be what one "wants" to hear, but what one "should" hear. Take it for what it's worth, should it be of any value or benefit to you. I present it without malice or ulterior motive. And you may feel free to tell me to simply go sc**w myself.

Many times when feeling bad physically we become highly frustrated with the fact others don't seem to care. Everybody has their own filter for what occurs in their surroundings. Our challenge is to learn not to give them permission to mess with our heads and not take ownership of their shortcomings. This allows them to take control of our lives and we are the only ones who may allow or deny that power.

The best example of my point is how you took the "power" of messing with your mind away from the individual using the power chair. That is what I'm talking about but applying it to all areas of your life. Regarding the dinner, who gives a dink whether they had seafood or not? Nothing but allowing them to distract your thoughts prevented you from simply fixing your own dinner or even leaving to go out for something. Waiting for someone else to "understand and respond" to what we believe they should, are misguided expectations of others.

I have been in your situation 100% and it took me some time to realize I was no longer going to allow these people to affect me in this manner. (Doctors and neuros especially.) I got very angry and began to be my own best advocate. The response of other people was nothing less than amazing. The power and strength I granted myself actually had a positive effect on my symptoms and their severity. As the movie said, "I'm mad as h*ll and I'm not going to take it anymore!" So I did something about it and took my power back.

I ask that you only think about this as it may or may not apply to your situation. Use what you can, discard the rest but do what is in your best interest. Do not give permission allowing other people to define you. Take that darn power control and don't let anybody move that chair but you. I know you are strong and none of this is a big surprise to you.

I will make it a point, should I ever come to visit, to politely ask which chair shall I sit?

Thank you for reading this. I hope it is of some help.

Your friend,

Oh Erin! it really does sound like stress is the key word of your corner right now, and stress...well, stresses me out! my sx go crazy when I am overly stressed, and I get all sorts of sx that pop up and go crazy.

I too have one of those sisters that has zero idea of how badly she impacts those around her, and has a Tough Patootie attitude if you confront her. Since I cant change her, I CAN change me. Can you schedule time at your b/f house when you know she will be in town? or taking over the house? Can you just close your door, and watch tv? order a delivery of food for your own door? As for the neice riding the chair like a horse, you did the right thing, just remove the remote. Little kids like things like that, and she was just being a kid after all. If her momma would take control and teach her...(not going there) and you do have your own space in your parents house. Your parents simply cannot refuse to allow one child to be home, and not the other. It just isnt fair. Even if one is handicapped. If the door is open to one, its open to the other. I am sure you get that.

I hope you take some time to relax. Do yoga, meditate, zone out, get out of that house, take a mini day trip, take some ME ME ME time, even if its just a bubble bath with the door locked. I know you have worked hard to take care of mom, but you also need to take good care of you.

My world changed dramatically when I stopped trying to change my sister, and started changing the way i reacted to her. I now view her as sad, lost, and unable to control herself. I cant get mad at a rooster for crowing at the dawn light, any more than I can get mad at a goat for chewing things. She is the animal she is, and me getting mad wont turn her into a princess. PM if you want to talk. :hug:

Reason I didnt leave last night, I'm scared to drive my car with all the numbness and reduced mobility crap going on. I'm scared my reaction time has been fubared. Not many restaurants will deliver at 930 at night too.

My dad ended up taking me up to a restaurant to get take out. (that was good, but it's bugging me this morning)

I didnt fall asleep till about 630am. It's now 945am. Dontcha just love the sleep deprivation from the MS sometimes? Now my head hurts. Argh!!! (neck hurts more now too)

I think I'm going to lay back down and see if sleep will happen again. I'm tired.

Hey Erin, I am just now catching up. Sounds like you had one heck of a challenging day, but you did get through it OK. I understand what you mean about driving. By doctor's orders, especially after the brain stem stroke, I am limited to driving within a 5 mile radius of home. Personally, I think he's trying to kill me because don't 60 some percent of all fatal accidents occur within 5 miles of home? :eek: :wink:

My biggest problem with driving is cognitive and attention. Too munch incoming info at the same time to process, easily distracted, forget I'm even driving a car.

Your's is the first post I read this morning, at 4:30 AM, and you made be laugh out loud which felt great. Why? You used the word "fubard." I love it and thank you! :hug:

Hoping you have a better day today since the day is brand new once again.

I still feel FUBAR.

I'm tired, sore and the MS trolls in my head are not letting me sleep. I'm trying to drug them into submission with ativan. It's not working...wait...maybe...nope.

A bomb could go off right now, and I'm calm enough that I'd just look over and critique the special effects and complain a little about the noise, but I probably wouldnt get up because the ativan has me calm...just not sleepy enough to let me sleep.

I'm going to attempt the sleeping again...I wish my Kindle book I just bought had the text-to-speech enabled on it. If it were, I'd have the kindle read me a story. The droning monotone of the computer voice it reads with would have me out pretty quickly probably.

ok, time for lap two on the sleeping attempt.

Erin, Hope you're sleeping. At 5:30 Pain got me out of bed again.

I slept some. Spasticity woke me up at 8am. That was unpleasant.

I'm waiting for the baclofen I just took to kick in before I try to lay down again.

I hate spasticity.

edited to add

cant fall asleep. My diaphragm (sp?) feels like someone is twisting it. Making my breathing feel weird. I'm not feeling a hug, just stiffness in the diaphraghm (too early for me to look up how to spell that word) took some baclofen for the Mother of All Charley Horses that woke me up at 8am. Hoping it'll help the stiffness when I breathe now too.

I get the feeling I'm not going to get any more sleep. argh!

Hopefully this will help me sleep tonight.
 

I got woken up this morning by some impressive spasticity.

It was in my right leg, and in my diaphragm. Took some baclofen and that helped the leg, but my stomach feels bad...really tight, and making me feel like I cant breathe. I think I'm actually breathing, but the sensation in my diaphragm is really uncomfortable.

I called my neuro's office (he's not there till the 21st) One of the other neuros there called me back. (think I might be switching to this guy for my neuro) I chatted with him about the problem for a few minutes. He actually offered me more steroids (tempting!) or some Valium.

my dad, a nurse anesthetist, had actually said something about valium last night, that I should ask for some to use, since he thought it was better than ativan for some symptoms. I dont remember why my dad thought I should get some...think I was talking about the pain in my neck at the time. Apparently valium has a muscle relaxer in it. So when the doctor suggested it, (I'd forgotten my dad mentioning it till I was offered it) I decided to go for that. I was really tempted to do the 'roids, but hate the taste of those...and the side effects of prednisone really really suck and I didnt want to make my insomnia any worse than it is.

Hope I dont end up with a Rx drug problem from this stupid MS making me hurt/not sleep all the time. I just dont want to do 'roids again for awhile. Hate the taste of prednisone!

Erin,

Just wanted to let you know that I am thinking of you and saying a small prayer you feel better soon (in all ways). Fell better kiddo!

hugs
jane:hug:

I saw my regular doctor today.

He's ordered a B12, TSH (or is it THS?...testing my thyroid test), and a CBC test. My dad (a nurse anesthetist) said that the CBC looks at all sorts of stuff, like looking to see if I have an infection somewhere, and seeing what my white blood cells are doing.

I just wanted to see if there's some other explanation for the ever-so-craptastic fatigue that seems to be sucking all my energy out of me thru my toenails. (really, it feels like all my energy runs out thru my feet when I'm standing)

So, I wont get a B12 shot till after they get the blood tests back.

This doctor also said something surprising to me. Every time I go see him...I ask about LDN. Lately I've been telling him "ok, here's my mandatory question about the LDN". Know what he told me. He said for me to go on the internet and see if there are any trials or any doctors online willing to Rx it.

what...wha?? huh? *blink blink* :eek: I think he basically just told me to go get a Rx from someone who will Rx, even if it's over the internet. So, he pretty much just told me it was ok with him for me to get a Rx for it...just not from him.

Holy cowpies! I've got to look up someone on the internet now and see if I can find someone who will do a phone consult to get me some LDN!!

I just tried some Valium that I got from the neuro's office this morning. (finally got to the pharmacy to pick it up) Got home and got the pill splitter out and broke a pill into 1/4ths. (pills are really low dose, 5mg each) Took one of the 1/4ths and I think I just felt that kick in. Some of the spasticity in my diaphragm let up...my neck still feels like a tangled ball of nerves and muscles, but I think I feel it helping the Hugging sensation.

I hope the Valium helps me sleep tonight. I might do a half pill for that.

I scheduled some PT for myself next week. Both the substitute neuro and my regular doctor said for me to do a lot of stretching and try to exercise and do stuff. I'll try it. I know I wont like it, but I'll try it.

My left hand feels really weird. Kind of like it did after I broke it when I was a kid, and I tried to go swimming an hour after getting the cast off and my hand was so weak I had to swim one handed. (swam in circles) I guess I have a little weakness there. It's in my shoulder too.

I hope you feel better soon...severe spasticity is no fun and has sent me to the ER a few times. I found that sometimes its the only relief.

I am sending you plenty hugs and wishes that you get relief.:hug:

Thank you.

I think the 1/4 pill was enough to lessen the annoyance some...I think tho, I'll be taking a 1/2 pill when I go to bed.

Wish it would work on the pain in my neck. I guess I'll get back to physical therapy next week for that. Hopefully the fatigue will let me.