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

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!