That crochet forum I go to, we have a thread on the forum that's specifically for talking about medical issues. Some of the girls there have been really helpful when I whine about the MS there. I think one girl on that forum also has MS. She doesn't post much because she doesn't have the time/money to be on the forum all that much. But it's nice that there's someone there who understands the MS stuff. Several girls on that forum have chronic medical conditions, and there's a few that have had problems with depression. They've been really really helpful.

It's also nice that they don't mind that I swear like a sailor. Swearing helps a lot sometimes.

I spend way more time on that forum than anywhere else on the internet. Probably because we're all crocheters and knitters there. I try to use crochet and knitting as a stress reliever. That other forum is also a closed forum. Internet searches don't bring up the specific conversations that we have there.

It's just good that I have that forum, and this forum to come to for whining about the MS, and other stuff. I like it here at Neurotalk because you're all full of information about MS. And it's fun here too, even if I can't swear like a sailor here.


I had a bad night last night. Didn't sleep till 7ish this morning. I have a headache, and I've felt queasy for a couple of days. I have a non-MS issue that came up yesterday. (nothing serious. Just annoying)

All my muscles hurt, and I can barely move. I've pretty much given up on the PT, because it wasn't really helping. I'm going to try again with getting some PT. But I don't think anyone realizes what I want, even tho I've told them. I want something that's a bit more intensive. I keep getting PT from people who don't want me to show up more than once a week for a half hour at a time. I've used up all my insurance allowed PT. (not that the insurance actually pays for it. My deductible is huge, and I haven't met it yet)

I think this is part of why I've been a bit depressed. No one seems to be paying attention to what I want. Even tho I've begged. I try to do the PT stuff by myself, but I just can't seem to do as much alone, as I think I could do with someone helping me. Going to call my neuro tomorrow, and ask what I'd have to do to go to an in-house rehab or if there's some where else I can go to do something a bit more intensive out-patient.

Hi Erin

So sorry that this is happening to you....sounds like a case of "number please..."

Not you personally - but that is the problem, everything has become so impersonal these days

How are you doing on the new medicine, Erin?

took some the other day. Spent the day dizzy, and tired, and feeling incredibly weird. Didn't like it.

Haven't taken any more.

about to go see the neuro. I might post something later when I get home.

So I went to the neuro.

Told him I wasn't all that happy with the way things were going. I'm unhappy with not being able to walk, and I didn't like how the physiatrist that I've been using didn't really listen to me.

My neuro recommended another physiatrist to me, and even had his office call to make the appointment for me. It's not for another month, but the new physiatrist is supposed to be the best in the city according to the neuro. My dad agreed with that. My dad knows that doctor too. Neuro said that I needed more of an evaluation for trying to figure out what they can do to at least get me back to walking with a cane. The physiatrist I had picked out to go to after my insurance took the other one away from me never really did an evaluation on me. All he did was talk to me. Neuro told me that I need to go and have this guy look at what I can actually do, and then set me up with PT that's more intensive than a half hour once a week.

He also wasn't all that sure that I needed an antidepressant. He thinks my being depressed about stuff is more situational. (kind of hard to be happy when you're in pain all the time, and have parents with more serious health issues of their own) He didn't think I'm depressed. Told me to talk to the doctor that Rx-ed the antidepressant.

He also clarified what he said about getting a cortisone shot for the frozen shoulder. Said for me to get that done. Especially if I'm in pain. (I am in pain. It hurts!) Just told me no oral steroids for pain, and no oral or IV steroids for any MS stuff till next year. I'm going to very quickly get another appointment with the shoulder doctor so that I can go get another cortisone shot or three. My shoulder is killing me!

Now I need to get my dad dealt with. His cardiologist has basically abandoned him for the past year. My dad got a pacemaker last July. He had one visit with the cardiologist after that, and then nothing. They never did a scan of the pacemaker to make sure it was in the right spot. That cardiology clinic is moving. It seems like they're more interested in their big move than they are with their patients. I seriously think this place is bordering on medical malpractice. I'm seriously peeved about that. I told my neuro about what was going on with my dad. My neuro said my dad needs a new cardiologist.

and I just talked to my aunt. The one that's a nurse practitioner. She knows the new physiatrist very very very well. She's actually good friends with him. Told me to drop her name. Said that this guy is a really good listener. He was the very first physiatrist in Omaha, and is the one responsible for setting up most of the physical rehab centers in Omaha. So, I'm feeling a lot better about going to see this guy.

Heck, just talking to the neuro today made me feel a lot better. Not quite as tense feeling as I'd been.

Sounds like things are moving forward in a good direction Erin. I am concerned about your Dad. Is he not getting routine telephone pacemaker checks??? I think you are right, he needs a new doctor.

He has the little machine that apparently downloads info from the pacemaker, but other than that, the only time he's talked to anyone at the cardiac clinic is when he's called them.

that, and the one time I made my dad go to the clinic earlier this year. He had hurt his left arm, and it was swelling up a LOT! I'd read that if you have swelling of the arm with a pacemaker, that could be a bad thing. So I kind of blackmailed him into calling his doctor, and then made him go down there. That's pretty much the only time the doctor has actually seen him since the surgery to put in the pacemaker.