It is so helpful to hear about others struggle. I have been feeling so alone and isolated with all my challenges. I get up at 4:15 am so that I can leave the house by 7:50 am.

Mariel you are brave to have left your son with your family. I will not do the same. I am blessed to have my husband, my step daughters family, and my priest (she has two children, one older one younger) who are able to step in if needed.

My husband too has been incredible. When he told his sister about my diagnosis her response was "You were made to do this." He was his mother's support through 3 bouts of cancer. The first he was the same age as my son.

The answer to that question can be NO-it can be affected, but there is a catch.

The answers to some of these questions may need to be yes
DMDs?
Alternative treatments?
Psychotherapy/Psychiatry?
Support group?
Meditation practice?
Breathing practice?
Yoga practice?
Acupucnture?
Massage?
Water exercises?

Not just once- MS didn't develop overnight, one swim class won't make it all :wink:better.

I am sure others have things that have helped them

There you have it. You can answer your own question!

Let us know how they work!

walking is getting worse. I don't understand why it's getting worse. I keep getting up and walking around, and I've been doing PT for months. It's worse now than it was a couple of weeks ago.

I'm going to try to go to my now-out-of-network-because-I-was-forced-to-change-my-insurance doctor on monday. (I do not want to start going to a new doctor now. Good thing I got to keep my neuro)

What a shame you have to do this, Erin. Bad enough to have these increasing problems and not have your doctor covered by insurance.

I'm trying to sleep. I'm uncomfortable enough that it's not happening fast. I'm basically laying here, trying to read a book.

Wish I didn't feel like crap.

Tired. At least I slept a lot yesterday. Might be why I'm not asleep yet tonight.

"I keep getting up and walking around, and I've been doing PT for months. It's worse now than it was a couple of weeks ago."

Ugh...I'm so sorry that you are going through a rough patch Erin. It can be so frustrating when we do all of the "right things" and still, it doesn't seem to help.
At times like that I consider how much worse the symptoms might be if I wasn't doing the things that I do to help mitigate symptoms.

I hope that you will keep right on with the PT, exercises, a healthy diet and anything else that you can think of to help with the symptoms...even if it seems that they aren't working. Not doing those things can allow things to become worse and we can loose ground in that respect so quickly; then it can take longer, and be harder to recover from a rough patch.

For sure, sleeping during the day can disrupt the normal sleep cycle, and might make it difficult to sleep at night. Staying off the computer, away from bright light and stimulating activities a couple of hours before your normal bed time might help you to sleep at night.

Be kind to yourself Erin :hug::hug:.

With love, Erika

The body is as stiff as an old boot today; even after stretching. I've also done 2 sessions of 5 minutes on the cross country ski machine this morning. I only did the legs, as the hands can't hold the hand-grips and that usually works to get things moving, but the body is being particularly stubborn about it today.

I didn't have any big spasms in the legs last night, but you know that feeling in the muscles when the threat is there? Those painful twingy mini-cramps...that you can head off if you move the affected leg promptly enough? That's what I've had going on since this morning.

I'm heading for an Epsom salt bath now in the hope that it helps. If nothing else, I know that it will help the joints.

With love, Erika

Yes, I know that "that feeling of the muscles when the threat is there. Those painful twingy mini-cramps". After taking my final capsule of magnesium at 3 AM (and watching an episode of Doc Martin on streaming Acorn tv) I did sleep for hours. I forgot to take the last capsule because I had a busy evening and fell into bed without doing all my usual routine. My busy evening included getting lost on my way back from Santa Fe to Los Alamos. I am getting new glasses in the old frames because the old frames fit well. And therefore, my vision is slightly poor. And my mind was elsewhere. So I ended up in Espanola and had to inquire at a Motel 6 to be sure where I was and then at a Domino's Pizza to find the way back (I rarely go to Espanola). So I forgot my magnesium and then was too worn to get up again until 3 AM. But finally....as so many times before....I did get up.

I wish there was a capsule you could take, Erika, in this time of trouble.

I had gone to Santa Fe to see some people I know, because I am basically alone since I had to quit my church due to the new carpet last November. I do baby sit but otherwise my social life consists of going to doctors, dentists, and other people I pay.

Well, thankfully the Epsom salt bath helped some, along with stretching while I was in there. Though the twingies are still there they aren't as bad as they were this morning, so I got out the mop and did my floor a little while ago. Wringing the thing out by hand in hot water is good therapy for the finger joints and wrists and the mop helped to keep me upright.

Hey, there's no reason that therapy can't happen as a multi-task sort of thing.

Of course, I'm now thinking about transplanting plants as therapy for these joints and using garden implements in a crutch-cane sort of multi-tasking way as well :winky:.

With love, Erika

I have some of the symptoms of transverse myelitis. Things feel worse.

numbness, weakness, and uncoordinated in the legs.
numbness around my waist, and up around the diaphragm.
tingling in my arms. My hands feel more numb the past couple of days
my neck hurts some
back pain.
clothing touching my skin is really uncomfortable
frequency
other potty issues

I just all around don't feel good.

A lot of these symptoms, I can feel getting worse and worse every day.

I've been feeling a lot of anxiety since before I even thought about it being TM. I didn't even consider TM until just a little while ago.

Last night, I was just falling asleep, and all of a sudden I felt like I was choking. I had to sit up quickly and struggle to breathe for what seemed like a minute or two. I was afraid to go to sleep after that.

This has been building up and getting worse since Christmas. I've complained about things getting worse to the therapists at PT, and I talked to the neuro about things a few weeks ago. (he said we'd "monitor it")

If it is TM, the financial costs are going to bankrupt me, and probably bankrupt my parents, since my dad helps me with bills. I do not trust the new insurance to pay for any of this like it would have last year on the old insurance policy. I think the worry about that is worse than actually worrying about what the problem is.

I'm trying not to panic. Going to see if I can get an appointment with either my regular doctor or my neuro tomorrow. Hope they're not on vacation. They're usually not available whenever I have a flare.

Edit

I took a shower, and as I was drying off I found a red spot on the left side of my stomach. It kind of looks like a blister. Yes, I think I know what it is. I pretty much only sleep on my left side, although lately I've been forcing myself to sleep on the right.

I'm past being frustrated with everything and I'm starting to move into panic.

And right now, I'm feeling like some things are worse than they were earlier. This stuff started slow back towards Xmas, and now it feels like things are starting to get worse at light speed.

Feel like I'm either dying, or I'm about to go nuts. I can't handle this stress now.