Erin,

Sorry that the body doesn't seem to be improving. Could you be anemic? That might account for the fatigue, weakness and the bruise. When was the last time you had your CBC done?

With love, Erika

Last month, when I had my b12 level checked. The doctor did the CBC and a bunch of other stuff done.

I just feel really really bad. It's like I'm getting worse on a daily basis now. I really wish I knew what was wrong. My dad has been sick with his heart problems, and he hasn't been feeling all that good either.

I don't understand it at all.

also don't understand when I call the doctor (neuro) and told him how bad I was feeling, and he said it was the steroids I just did.

feel bad enough all I want to do is cry. I feel like I'm dying. Been feeling like this since last summer. (the day I got that new car actually, is when this started) I started trying to exercise, and do anything I could to keep my energy and muscles. It just seems like every time I'd get closer to feeling better. Something would happen, and I'd feel so horrible for weeks at a time that I couldn't do anything but just sit here and read. So, of course I'm getting weaker and weaker. When I was doing the PT, I could feel myself feeling worse. Wasted all that PT. The only good thing I got out of the PT was when I was doing it for my frozen shoulder. That actually helped. Everything else, it didn't.



I don't even know if MS acts like this. If it's "normal" (yeah, no "normal" in MS, is there?)

I think you're worried about your Dad. An added stress like that,
could exascerbate the MS sx.

My aunt (the nurse) was over here tonight. Took one look at me, and wanted to know if I have lupus. Apparently I have a bright red rash on my face. She was worried until I showed her the printout of the bloodwork that I had last month. She said my bloodwork from late february is absolutely normal. Except for the b12 being low. If I didn't have MS, I'd be in great shape.

She wanted to know how my glucose was 82 (think that's what it was...) She said with all the crap I eat, I should be diabetic. She wanted to know how I had a blood sugar like that. (I have no idea what a normal blood sugar or abnormal blood sugars should be) I probably hadn't eaten yet the day that I had that blood taken. I wasn't eating well, and I'd been losing weight without trying.

My aunt even told me that from my blood test that I don't have allergies. I have no idea what thing she was looking at on the list when she said that, but she claimed that from the test results, I shouldn't have any seasonal allergies. (then why do I sneeze when I'm around ragweed?? and why do I have reactions to shellfish??)

My aunt told me before she went home that she thinks my not feeling good now is me coming down off the steroids. And she thinks I'm deconditioned (I already knew that. I keep trying to do stuff, and it's not helping)

I'm going to the doctor thursday for a follow up for all the steroids I choked down over the last month. See what he thinks. Then I need to go see the new physiatrist again. I better make the appointment for that tomorrow.

Erin, could there be some depression there also?

I really don't think I'm depressed. I'm usually in a good mood, seemingly happy most of the time. Except when I feel like crap like I do for an extended amount of time. Lately I've felt sick ALL the time. I kind of feel a bit abandoned by doctors, even tho it's not their fault. (sorry if this sounds political, I'm trying to not be... but I think it's the health care law. I had great insurance until that thing hit. Now I'm spending all my money on doctors and other stuff because the deductible is way too high. I'm going to go broke before I hit the deductible. And I'm suddenly blocked from all the good hospitals/doctors because they suddenly don't take my insurance anymore)

This past winter was really hard. I was pretty much trapped in my house by the weather. (too bleeping cold!) and I was really bored because I couldn't get out to go yarn shopping, or go do anything fun.

I am really stressed out by my mother constantly verbally abusing me and my dad (I might have mentioned that she had a TBI in the late 1950s, and then she had West Nile encephalitis a couple of years ago. Which probably fried her last nerve). Every time I thought I was feeling ok, something would happen, and I'd start to feel really sick.

My dad being sick, and him being the only person in the house that's driving at the moment is starting to worry me a bit. His driving has scared me a few times over the past few weeks. (been a few times where I thought he was going to do something similar to what my neighbor did the other day to the back of her garage)

I need to get my car set up for hand controls. Trying to get that set up seems to be harder than I thought to have happen. My old physiatrist that I lost in the insurance mayhem seemed to be dragging his feet. I don't know if it's because he was also my mom's physiatrist, and he was confusing me with her or something. Or if he was just a lazy doctor. He's the only doctor I didn't mind losing. I've only seen the new physiatrist once. I need to go back and see him. He Rx-ed me an AFO for the left leg, but I hate that thing. It hurts, and I can hardly walk at all with that thing on.

ok...can whatever deity I angered stop picking on me?

Been feeling like crap for weeks. Feeling a little worse every few days. Yesterday I turned my left knee a little bit, and hurt something. My doctor said it's patellar tendonitis. (This is something I've had problems with off and on a lot of since the 1990s. I just haven't had a problem with it for about ten years or so)

So, today. Walking is really bad. I'm trying to put towels away in my linen cabinet, and my knee hurts when I'm standing, the other leg is just getting really tired.

I'm afraid to try using my exercise bike...now that it's finally put together.

Seems like anytime I try to do anything to make stuff better. It all goes to hell. I've been trying to exercise for months. Something always happens to interrupt it.

kind of feel like if I could have had that bike put together back in january when I bought, maybe I could have been using it all this time, instead of walking past it in my living room for the past four months.

I figured out by myself why my ankles are swollen. They're not actually swollen. That's all the muscle turning into fat instead.

and I'm not depressed. I'm just frustrated and annoyed. With a lot of stuff.


EDIT

my dad just scared the crap out of me. He has a pacemaker. He has asthma. He is the most doctor phobic person I've ever seen. (he's a bleeping nurse!)

He hasn't been sleeping. At all. His driving is getting so bad, I'm terrified every time I get into a car with him. He told me tonight, that when he lays down on his right side, he can't breathe. I'm telling him he has to go to the doctor, and he tells me "I have an appointment with them, it's <some date a month away>."

I was heading downstairs on our little electronic stairlift. I started hearing what sounded like screaming. My dad had laid down, and couldn't breathe. I was looking for my cellphone in my pocket, because I'm in the middle of the stairs on the "snail-lift". I was going to call my aunt. She's a cardiac care nurse. My phone was downstairs. I finally got upstairs, and talked to him. He said the screaming noise is him trying to force air in.

This is not normal. I told him he's calling his doctor tomorrow, or I am. He's getting weaker and weaker. (I'm getting weaker and weaker too, just for different reasons) He needs to be able to sleep. I think his doctors have been kind of ignoring him anyways. The hospital that he had his pacemaker put in at is going to be closing soon. I think the doctors are more interested in their moving, than in treating their patients for some reason. At least the cardiac center is giving us that impression. That hospital used to be a level 1 trauma center, but it's in a part of town where they get a lot of uninsured people in their ER. They're losing money. It's a for-profit hospital. They're closing that hospital, and moving all the doctors to another hospital in the nicer part of town. Abandoning all the people on the poor side of town. Actually it's still a level 1 trauma center. It just won't be much longer.

I'm calling my new physiatrist tomorrow, and am going to tell them I have to get hand controls for my car now. I can't wait. I need to be able to drive. My dad's driving is scaring me to death.

I called my regular doctor back this afternoon after I got home from the appointment with him. Told him to give me the PT that he suggested, because it doesn't really matter if I only have 15 PT visits left on my insurance. My crap insurance hasn't been paying for it anyways. I have to hit the insanely high deductible first. The PT that I did for my shoulder earlier this year, along with the other PT for the MS stuff that I think I wasted (the physical therapists seemed to ignore me on what I was having problems with) cost about $2000. I just paid the bill the other day. I'm going to go broke, and my parents will end up going broke when they have to start helping me because my insurance is really not affordable for me. And I can't change it to something cheaper that will cover me better, because there really isn't anything comparable to what I used to have.

Erin - So sorry to hear about your dad. He needs to be seen as soon as possible. Yikes!

Also, are you on Medicare or do you have a private insurance company?

As for Lupus, there are a bunch of tests for it. Believe me, I've had them all and apparently do have Lupus in addition to MS. From what I understand, you can have a negative ANA test and still have Lupus. I've only had one positive ANA and one positive anti-DS but not at the same time. It's one of those tricky diseases. Apparently, I also have Sjogren's too, another AI disease. I do not get a rash across my face and not all people with Lupus get that rash. According to the rheumatologist I saw, the Lupus I have is only affecting my joints. I was going to get a 2nd opinion but ended up having emergency surgery instead. So, discuss the rash with your PCP and go from there. Further testing may need to be done and Lupus may be the reason that you have been feeling poorly, in addition to all the other things you have going on with your life.

Given your parent's health status, finding ways to be independent is so important for you. If you can't get the hand controls right now, see if there is some sort of transportation for people with disabilities in your area so that you can get to places on your own without having to depend on your dad. He is not in good health from what you have stated and you shouldn't depend on him. Additionally, find ways to help your parents out as they need that right now. While you are their daughter and they love you, they need someone to take care of them right now and not them taking care of someone else.

I talked to my aunt (dad's sister-in-law, she's the nurse) today about it. My uncle had similar things going on when he was sick. Trying to get her to help. Just without him knowing that I talked to her.

I talked to my regular doctor yesterday. He said he thought the redness in my face is probably rosacea (sp?). I've had a lot of blood tests over the years. I've never had one test positive for lupus.

At least today, my b12 is up finally.

I have private insurance. The rate I'm spending money going to doctors and PT, I might not have it for long tho. I'll run out of money at some point. My insurance premium might have dropped a small amount, but the deductible is so high that all my money is going towards the doctor's bills that the insurance isn't paying because I haven't hit the deductible...and I probably won't hit the deductible. My dad told me that it usually took me awhile to hit the deductible every year. This year, I'm pretty sure that if I had my old policy. I'd be very close to the deductible. Or at least a little more than halfway.

I'm reading this, Erin, and feeling so sorry for the struggle in your home, by everyone living there.
Please keep pestering whoever needs to do something to get the hand controls. Sometimes you have to pester to get attention. We are trained to be patient and think of others, which is VERY GOOD, but there are times you have to just fight for your needs.
That's what happened to me after the Cerro Grande fire here in 2000. I was the only one who could fight FEMA for the insurance benefits they promised when they took over our home insurance because the fire was started by a gov't employee doing a "prescribed burn." My husband was no longer able to fight, at that point, sort of like your dad, just ran out of ability to cope with all the myriad stresses. You have to be a fighter now, even if you are ill. Not fair!