ok, I'm panicking
 

I can barely walk. Can barely lift my feet. Walking across a room feels like I'm trying to walk thru wet cement that's up to my waist. My walking seems to have gotten worse over the weekend. I don't think I'll be actually making it to my first physical therapy appointment tomorrow.


I'm really uncomfortable and extremely stressed out.

Had a bad evening when my mom, who is not sympathetic or empathetic at all, got mad at me for something and she threw a temper tantrum and a box of ziploc bags across the room and yelled at me. I really dont think that she's noticed that I'm having a serious problem. Either that or she noticed and just doesnt give a flying **** about me.

I'm afraid to go to sleep because I dont know if things that are currently working right now will be working when I wake up. (it's been worse every morning when I get up)

I just had a half of a valium pill to see if that'll calm me down and hopefully relax the muscles in my back that are trying to twist themselves into various pretzel shapes.

I'm just really scared to go to sleep.

Omigosh Erin

I would be feeling just as scared as you....but please remember the more you tense, the more you stress and the more scared you are the worse this will be (I know, you want to throw something at me now - I am sure I would if the situation were reversed - logic and reason are fine in theory but right now they belong somewhere that is considerably more rude and less comfortable :))

Please just know that I am thinking of you, hoping for the best and that tomorrow will be better for you than today.

xox

Perhaps we all should take up a collection so we can buy your mother a clue. She should realize that you are in need of her sympathy and support.

I know what you mean about the being barely able to walk. Isn’t it amazing how, from day to day, you can go from feeling relatively mobile to feeling like you’re dragging an anvil around with you? The good part, though, is that no matter how bad it gets, you know that you will more than likely feel better again. At least that’s what I pin my hopes on when I’m having a crummy day.

(( Erin )) hugs to you. ☺

I don't know if this will get better. It feels pretty bad.

My regular neuro is back in his office this week, so I'm waiting for him to call me back. I just get the feeling he's going to say "I don't know what to do with you" and pass me off to someone else. At least if that happens, he'll be admitting that he doesn't know what to do, rather than the neuro that I talked to on friday that's not my regular neuro (he was one of the business partners of my neuro) who told me that weakness and fatigue weren't part of MS. (what? really? when did they change that in the "brochures"?)

Perhaps he meant to say that weakness and fatigue are not exclusive to MS. They are symptoms of many other things including but not limited to: CFS, Anemia, Obesity, Pregnancy and Depression.

Maybe there are other things going on that need to be addressed too. Maybe not by a Neurologist but a different specialist.

Could you be anemic? Maybe a nutritionist can help insure that you are getting good iron and other essentials.

My fatigue was at its very worst at the time before my heart valve surgery.

good luck with everything.

my real neuro just called me back. Said he read the notes that his partner I talked to had left. He didnt say specifically what, but said he didnt quite agree with what the other guy said. I told him how the other guy told me fatigue wasnt an MS symptom. He said that was news to him, since it's, in his opinion, one of the nastier symptoms of MS.

He changed how I take the baclofen. Told me to break the pills in half, and use half pills in the morning and afternoon to kind of make the spasticity let up a little bit, and then use either whole pills of baclofen (like 2 pills) at night. Said I could use valium at night too.

I dont like baclofen or valium. Dont like how they make me feel. Wish I didnt have to take them. At least with the valium, I dont seem to have to take that all the time. Usually only use that if things are seriously annoying.

(((Erin))) Sorry you're going thru all this. I also take baclofen and was in such pain the neuro kept increasing the dose until I was almost like a zombie. At that point, he decreased the baclofen and added tizanadine (zanaflex). Maybe that could be an idea for you. I have found when one meds stops or never really worked, change it up. A body develops a tolerance to meds. Prayers coming your way for quick relief and healing :hug:

Look on the bright side. At least the zip lock bags weren't full of frozen food.

yeah, but it was a huge box. (apparently parent's bought it at Sam's or Costco)

I went to my PT appointment. I'm a bit disturbed by how things were going when the physical therapist was testing my reflexes. I know enough to know that they weren't great.

They put an e-stim on me (kind of like a TENS Unit except it's hooked to electrical power and not battery operated) and that seemed to actually help a little bit. I felt pretty good for about an hour or two after the e-stim. I could tell when the effects wore off.

Good thing I have a TENS Unit. I'm about to wire myself up and see if I can get the electrodes placed in the same spots they were in at the PT place.

Sorry to hear you took a turn for the worse. At least you were able to talk to your neuro and not his partner and that your neuro is being supportive.

One of the downsides of baclofen is that you have to take it every day regardless. It's not one of those meds you can take every now and then. But, I hope the new dosing schedule works well for you.

Try to take some deep breaths. You have been this way before and have survived it just fine. Keep reminding yourself of this. Say it over and over. Right now, you need your rest and to take some time to take care of yourself. I know there are some issues with your mom and it is difficult to distance yourself from it, but do your best to do so at least for a little while.

Let us know how you are doing! Feel better, Erin!:hug:

I haven't been this bad before. This is the worst it's been so far.

it really really really <expletive> sucks!

So sorry you're feeling so horrible, Erin. This monster pushes our feelings and emotions all over the place. It's good you got to talk with your regular neuro....at least he knows fatigue is part of MS!!!! Try not to panic and hopefully in time, this too shall pass....:hug:

I don't blame you for being afraid, so would I. I
remember my scary exacerbation of 1992/3.:eek: But
even it passed and I felt better again......So, hang in
there.

PT and OT also are important in the scheme of healing.
Be sure to tell your Physiatrist that you need to rest
between sessions, because of MS fatigue.

I hope you'll feel better soon. I feel blessed that I haven't flared in so long. Knock on wood.

Do steroids help you? I always got worse when I took them. I hope they can do something soon to help. :hug: It doesn't help that your mom has that attitude either I'm sure.

I had IV steroids last summer when my hands went numb, and the steroids made me sick. If I try them again, I'm going for the cheap $5 bottle of oral steroids rather than the expensive needle and plastic tube in the arm variety.

If it makes me sick again, I don't want to pay a billion dollars for it.

I am really not feeling good today. I want to take a shower, but there is just no energy to do it. I want to go get my hair cut because my hair is driving me insane, but I don't have the energy to sit in a car to drive for twenty minutes to the guy who's been cutting my hair since I was 10yrs old. I may end up going to the place that cuts my mom's hair. Not sure I want to do that because I don't know if I want anyone touching me, and I don't want to end up looking like my mom and my sister. (sister uses the same place). Plus, I don't think I have the energy to walk in there.

Things are just really uncomfortable. I feel like I can barely move. I'm so tired. I really want to take that shower, but I'm afraid I'll fall asleep on the shower stool and end up on the floor or something. Just don't have the energy. I might attempt using our walk-in bathtub, but it takes forever to do that too, because you have to get in and sit down, and then close the tub door and wait for the thing to fill up. At least sitting in a tub full of water, I wouldn't have to hose everything off to get clean. I could just sit there and wash my hair.

this just sucks so <expletive expletive expletive> much that I don't know how much longer I can deal with this without having a complete meltdown.

My best friend doesn't get it. I mentioned on facebook that I wasn't feeling good and she said I need to get up and get out and go do something....umm...yeah, I don't think so. She basically said the same thing last summer when the steroids were making me so sick I couldn't walk thru a very small walgreens without wanting to lay down in aisle three and die.

I hope this gets better soon, Erin.

ANN

Erin, you take 1000mcg B12, 2000-8000 iu's D, (Iron if needed)??? Fish oil?
Change diet past week?

Steroids never made me sick. I embrace them & do more exercise then I ever could when it's steroid time. 60 laps vs 30 laps one time in pool.

Erin: My walking is really bad, but I've had spells like you have now that have gotten better with time. This may be temporary. There may be something in your system that is causing it.

As far as people understanding, in my experience no one can understand unless they have MS. I think the problem is, is that we all look too good on the outside. I wish everyone I knew could spend 24 hours in my body. At least we can vent here. But there is no excuse for your mom's behavior, and you should not have to put up with that.

I hope this passes and you feel better soon. Nora

:hug:

well, my mom kind of gets somewhat of a pass on her behavior because she had a head injury when she was 17 that made her a bit....difficult to get along with. My aunt said my mom was a bit of a <bad word that starts with "b"> when they were kids, but that after the head injury my mom got a little worse.

We're seeing as my mom gets older, that some of the weird things that she does are getting kind of worse. I think the behavior she's doing right now tho, with tossing things across the room, throwing her eyeglasses on the floor, might have something to do with the West Nile virus she had over the summer, and the medications she's still having to take from that (anti-seizure meds. One of the side effects of one of the drugs is uncontrollable rages. Wish they'd take her off of that stuff. Not that she wasn't already having uncontrollable rages before that, they've just gotten worse)

I think I feel worse every day. I'm probably not going to PT tomorrow. Think I'll go to my doctor's office tomorrow if I can get an appointment. I think this flare is the flare that I've been afraid of having ever since I got diagnosed.

About to attempt a shower. I can barely walk across my room right now, so it might be a little entertaining to see me attempt a shower in a little bit. (when I say "entertaining", I mean "sad and pathetic")

Oh, and to the person who asked if I take any supplements. Nope. Only thing I take is baclofen and the occasional valium.

and now I'm going to crawl into my shower and at least attempt to wash my hair.

I managed to successfully wash my hair. So very glad that we remodeled my bathroom when we did a couple of years ago. That old shower would have been useless to me the way I am now. I still wish I had more grab bars. (I have 3 in the shower, and two right outside of the shower)

Erin, have you taken your temperature? Could it be you simply have a fever? This has been going on for too long to simply be just a random fever, but maybe you have an underlying UTI.

My reaction to even the mildest fever is very much as you describe.

I don't have a fever. Before I was sick with that weird virus a couple of weeks ago, my temperature usually consistently ranged between 98.6 and 98.4.

Since then, my temperature seems to range between 97.7 and 98.2, consistently.

I've been taking my temperature every day, because there are some days where I feel really hot or really cold. I'm starting to wonder if there's something going on with my inner thermostat tho. Either that or my thermometer might be a piece of junk. It's an ear thermometer.

I had a temporal thermometer (the kind that you run over your forehead) but that thing was a piece of garbage. When I had that weird fever. The temporal thermometer kept telling me my temperature was 105F, and there was no way it was that high, because I wasn't dead.

My ear thermometer seemed to be a bit more believable.

I dont seem to have any symptoms of a UTI. I'm waiting for my physical therapist to call me back, because I might not be going to PT today. I am so tired I can barely walk across my house. I went upstairs earlier, and had to sit down for a bit before I did anything. Was too tired to make myself something to eat, and my dad looked like he wasn't feeling good so I didn't ask him to make me anything. (my mom quit making me something to eat years ago. She expects me and my dad to cook for her now)

If I don't go to PT, I'm going to call my doctor's office and see if I can get seen today or tomorrow.

I actually did the PT today. Had kind of planned on skipping it today, but they said they'd go easy on me, and put the e-stim thing on my back and try to zap the spasticity monster into submission for me.

This flare is making my left knee hurt a lot. I hurt it a couple of weeks before the flare hit, and now the spasticity from this flare is irritating the hurt knee. The physical therapist looked at my knee today and said the muscles were really tight. So, yay for me, I got extra exercises for my knee.

I'm going to go take a Tylenol and curl around my knee and whimper.

"Oh, and to the person who asked if I take any supplements. Nope. Only thing I take is baclofen and the occasional valium."

Erin!!! No wonder!! Jeeze, a good dose of B12 & D and a handfull of others I take would help probably everyone in here.

Without B12, i'd be a home dweller, tired.
Without D, MS would kill me & i'm outside in sunlight every day.

I take 140mg baclofen/day and yes, I still get terrible jolts/spasms.

Pushed wheelchair 1.5 miles today, yesterday & day before.

What? Does baclofen and valium eat nutrients out of your body or something??

Not that im aware of but they surely make you/us a bit sluggish!
B12 is the energy vitamin which is why energy drinks contain them.
Try 1000mcg B12 1st thing in the morning. D anytime. Low iron = fatigue/low red blood count which is the LAST thing you'd want if trying to get strong.

I'd have to say "or something'. Even the most nourishing diet (organic veggies, fresh fruit, grass fed beef are likely still lacking in some nutrients simply because our soils are so over-used that the mineral content is diminished.

And that is not even considering how nutrient-poor our over processed food are.
Here is an excellent article on how BigFood has us by the you-know- whats.
http://www.nytimes.com/2013/03/18/bo...moss.html?_r=0
We have to stop being victims of this manipulation and nourish ourselves.

<stepping off soap box before I fall off>

I'm going to ask my doctor if I'm vitamin deficient because of it being wintertime. I just want to know if I have something hidden that I'm not noticing that's making this flare worse.

Got to go see my regular doctor today. He did blood tests (normal, apparently) and listened to my lungs (clear and apparently normal), and then I got to go potty in a hat on a toilet and transfer it into a cup.

My little sample that I provided them had the barest hint of a UTI. He said it was just over the line for the bare minimum of calling it a UTI. So, I got a Rx for that. I haven't noticed any symptoms of a UTI. Even tho there's some altered sensation and stuff, I've been doing everything normal in that area. Nothing was hinting to me that I had an infection brewing.

Maybe I'm just really sensitive to infections that even the most mild infection can set me off?

Those UTIs can be sneaky little devils..:mad:

Glad you're on meds and hope you are all better soon.

Not on the antibiotics yet. My dad forgot to pick them up when he went to the store...so I sent him out again for the antibiotics and told him to bring back some Popeye's chicken while he's at it.

I'm hungry.

and now that the doctor told me that I probably have a UTI, I'm starting to feel it. Dang that power of suggestion.

I doubt he can check b12, d, ect in office.
What's your red blood count?

he didn't tell me what the results were. They do have a lab. I'm going to call them in the morning to ask for some other antibiotics to head off the other kind of infection that the antibiotics for the UTI will probably cause, so maybe I can ask to talk to the lab department at the same time and see if they'll tell me what me bloodwork said.

Good luck Erin - I hope this is all getting you closer to the answers you need to feel a LOT better.

Hugs

Lyn

I've gotten a few antibiotics into me, and I'm starting to actually feel a slight difference in the quality of crappiness that I was feeling. Slightly better quality of crappiness...or maybe not as crappy feeling. Still weak and fall asleep every ten minutes.

I really did not feel any of the symptoms of a UTI, other than the MS symptoms being really really bad. Now that I have a few antibiotics in me, I can tell I was feeling sick, and just didn't recognize the symptoms.

Oh man, the only thing I miss about living in the South is Popeye's. Tried a Popeye's near Chicago and it just wasn't the same. Almost a good thing there isn't one near me.

Our bodies are weak and tired enough from trying to compensate for the effects of MS, any tiny bug or infection that joins the onslaught can enhance our symptoms. I say "can" because, of course, not all of us react this way. Erin, you might be having a psuedoexacerbation brought on by your body working extra hard to fight that borderline UTI. I hope that's all it is, and once it is out of your system you feel back to your normal!

Hope you are feeling better today Erin.

It sounds like between the virus you had and the beginnings of a UTI, you ended up in either a psuedoexacerbation or exacerbation. I'm glad they did a urine test and caught the UTI early enough.

Remember, we can have infections and not feel it. I have a local MS friend who never feels when she has a UTI and has been hospitalzied many times due to such. Now, anytime her symptoms start to flare up some, she gets her urine checked just to be on the safe side. Also, like any other senory symptom, we can lose feeling in that area as well.