Unexpected medical adventure
- Thread starter TooPatient
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I am sorry this has been such an ordeal for you. Being jabbed at repeatedly is no fun. Hopefully you will start to have some improvement with the steroid treatment. We are all thinking of you!!
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Nurse change time. Hoping for Renae. The lady yesterday was really not as good.
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Hi, TP-
I am so glad you do not have any tumors! That is great news! Also great news is that you do not need brain surgery. With all the terrible stuff you are undergoing, I do not want to lose track of these two really, really good things. They may not seem good now while you are in pain, but they will once you are comfortable and safe later! (As I write, the trauma of a mere colonoscopy that caused me great discomfort is on my mind. I am usually very brave about painful procedures, even though I am a hypochondriac and fear outcomes. That day I cried, however. I remember thinking I was glad that my husband had come up from Virginia, because I wouldn't be alone when I died.)
As to intravenous steroids: no. But like lyra, I have had intravenous infusion. In my case, I got intravenous iron infusion at a hospital infusion center a couple of times. I do not remember it being painful.
I am thinking of you!
Hugs,
Deb
I am so glad you do not have any tumors! That is great news! Also great news is that you do not need brain surgery. With all the terrible stuff you are undergoing, I do not want to lose track of these two really, really good things. They may not seem good now while you are in pain, but they will once you are comfortable and safe later! (As I write, the trauma of a mere colonoscopy that caused me great discomfort is on my mind. I am usually very brave about painful procedures, even though I am a hypochondriac and fear outcomes. That day I cried, however. I remember thinking I was glad that my husband had come up from Virginia, because I wouldn't be alone when I died.)
As to intravenous steroids: no. But like lyra, I have had intravenous infusion. In my case, I got intravenous iron infusion at a hospital infusion center a couple of times. I do not remember it being painful.
I am thinking of you!
Hugs,
Deb
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You've been through a lot sis, hang in there. Been thinking about you all evening...I hope you can go home today, wouldn't that be nice.
I've had IV steroids. & as ksinger said, they do shorten the episodes. No, the steroids did not make my arm ache, my hunch is its (arm ache) due to all the other prodding & poking you've been going through. Keep in mind, the steroids will affect your sleep tonight. You'll feel roaring to go but tired at the same time tomorrow. Don't push yourself & just rest & eat well. MS is all about pacing yourself, energy wise, as your body is working so hard to overcome the MS issues.
If they decide you need to continue them, (& assuming you're going home today) have them arrange for someone to come to the house to administer, much easier then the other way around. Ask for a visiting nurse. Ugh. It stinks. Sending relaxing vides & tons of dust.
Wondering if you have any other symptoms such as numbness tingling etc? Balance, fine motor, gait issues? Were you fatigued when the eye issues started? Its quite a concept to adjust your thinking to MS (if that is the final diagnosis), no doubt. Hoping you get to sleep in your own bed tonight...
Good news re no tumors.
I tell anyone coming in to stick me that they get 2 tries, I tell them to use the butterfly. I also have been known tow. say "Send in your best because I'm a tough draw." Just say any of that in a kind but firm way, no one will be offended because they all know who is great at draws and who is not.
I tell anyone coming in to stick me that they get 2 tries, I tell them to use the butterfly. I also have been known tow. say "Send in your best because I'm a tough draw." Just say any of that in a kind but firm way, no one will be offended because they all know who is great at draws and who is not.
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Not tumors! Huge check mark in the positive column! Hang in there TP. Hopefully yesterday will be the worst if it and soon you will have a diagnosis and workable treatment plan. In the mean time...missy will help distract you with some more stunning bling!
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No other symptoms. No way to know fatigue... I am in a CS bachelor's degree program and final exams are today (not for me... I am just retaking the class).
Had no idea the steroids would keep me awake. I was up all night! Had no idea why. Blamed my sore arms or my nap earlier in the day.
I'm not ambitious at all right now. Just want to be mellow. Relax and have my meals delivered.
Definitely have meals delivered and take it easy. You've been through so much physical and emotional stress. After my infusions, I give myself a total cheat day. Sometimes postponed until the next day, because I just don't feel great on day one. Take care. I hope your vision improves quickly.
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Another bad IV ouch.. .
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Still waiting for IV nurse. The nurse hooked up the steroid drip and it HURT as it got going. She slowed the flow and it was still BAD pain. Oh... A puddle on the pillow under my arm...
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Yikes, so sorry for the pain with the IV's...ugh.
Emotional distress is like sawing wood all day, it is quite exhausting. Glad you are taking it easy. Just rest & relax as best you can today. Wonderful they've ruled out tumors. In my case, was actually happy it was MS as opposed to all the other stuff they were considering.
Are they planning to continue the steroids?
Emotional distress is like sawing wood all day, it is quite exhausting. Glad you are taking it easy. Just rest & relax as best you can today. Wonderful they've ruled out tumors. In my case, was actually happy it was MS as opposed to all the other stuff they were considering.
Are they planning to continue the steroids?
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Hi TP,
Just checking to let you know are in my thoughts and prayers. I’m hoping you can find out what is going on and it turns out to be nothing too serious. Hugs!
Just checking to let you know are in my thoughts and prayers. I’m hoping you can find out what is going on and it turns out to be nothing too serious. Hugs!
Toopatient,
I struggle with IV's too (bad veins, always have, and it's just the way I'm made). I find that they ache all the time and fail quite often, and it usually takes 5 - 6 tries on each hand to get one started (so much so that I'm shocked when someone gets it on the first go or two). Ask if they have an IV specialist in the hospital. Often they have someone who is known for being a wunderkind with them who can be called in if someone is challenging. Also, lidocaine cream can help to numb your skin before they try starting another one. When all else fails, places like the forearm rather than the hand can be way less painful, even though they are a bit harder to start. Oh, and putting a hot pack on the site for a few minutes before hand will also often pop up the vein and make things easier (the nurses should be able to give you one). Plus, once started, I have to admit that I find literally every medicine that I have ever put through one hurts. Some burn, some sting, some ache, but they all hurt - so a hot pack even when one is running can help. Last time I was in hospital I had to wear long sleeves for weeks because I was black and blue all over from the stupid things.
As for the steroids, yeah, they can make you be awake and all revved up. Maybe even a little manic (irritable, expansive, overly energized, hungry...HANGRY). But they also work really well for all sorts of things, so it's worth it. Hopefully you are feeling better soon!
I struggle with IV's too (bad veins, always have, and it's just the way I'm made). I find that they ache all the time and fail quite often, and it usually takes 5 - 6 tries on each hand to get one started (so much so that I'm shocked when someone gets it on the first go or two). Ask if they have an IV specialist in the hospital. Often they have someone who is known for being a wunderkind with them who can be called in if someone is challenging. Also, lidocaine cream can help to numb your skin before they try starting another one. When all else fails, places like the forearm rather than the hand can be way less painful, even though they are a bit harder to start. Oh, and putting a hot pack on the site for a few minutes before hand will also often pop up the vein and make things easier (the nurses should be able to give you one). Plus, once started, I have to admit that I find literally every medicine that I have ever put through one hurts. Some burn, some sting, some ache, but they all hurt - so a hot pack even when one is running can help. Last time I was in hospital I had to wear long sleeves for weeks because I was black and blue all over from the stupid things.
As for the steroids, yeah, they can make you be awake and all revved up. Maybe even a little manic (irritable, expansive, overly energized, hungry...HANGRY). But they also work really well for all sorts of things, so it's worth it. Hopefully you are feeling better soon!
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I'm sorry the IV is so painful. There are special patches that are supposed ro numb. I personally get a rash from them, but maybe it's worth asking...
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Not tumors is great news.
Hang in there TP
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Hang in there TP.
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I had the nurse call Dr to approve 4mg Ativan orally before next try. Waiting for call back.
Great suggestions! Told DH too. Hot pack first. Numbing gel -- I don't GAF if she didn't bring it she can go get.
Great suggestions! Told DH too. Hot pack first. Numbing gel -- I don't GAF if she didn't bring it she can go get.
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Do they plan to keep a port in, if they are planning further infusions this week?
Do they know you had trouble sleeping? Maybe they could prescribe a sleep medication so that you can get some sleep?
Hang in there!
Do they know you had trouble sleeping? Maybe they could prescribe a sleep medication so that you can get some sleep?
Hang in there!
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Just one more tonotomo then done.
I am Leary of port due to infection risk. Dogs bring in dirt and love to hug me. Cats have their own germs. One girl sleeps on me all night. Plus 65 pound dog hugs worries me about having it pulled on even if wrapped.
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Yikes, so sorry for the pain with the IV's...ugh.
Emotional distress is like sawing wood all day, it is quite exhausting. Glad you are taking it easy. Just rest & relax as best you can today. Wonderful they've ruled out tumors. In my case, was actually happy it was MS as opposed to all the other stuff they were considering.
Steroid just today and tomorrow
This is all very upsetting! I'll be honest, I've been on the infusion thing for almost 2 years, and I still have to take clonazepam each time. The IV nurse is wonderful. She has never hurt me. That doesn't matter. I've spoken to her about my stress and anxiety about IV's and how I've had really bad ones in the past, and she is very understanding. She goes out of her way to be calm and careful. Do whatever helps you. I only have 1 good vein. I know where it is and point it out to others who need to access it. I don't take chances even though I'm not the professional. Hang in there.
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Ultrasound guided insertion. Wow!
First try. Very little discomfort. In very solid. I won't do the other again.
Asking to postpone going home so I can keep this one for the steroid in the morning.
First try. Very little discomfort. In very solid. I won't do the other again.
Asking to postpone going home so I can keep this one for the steroid in the morning.
Wow. I didn't know they could do that! Thank goodness they got a good one in, and staying overnight to keep it for the morning is a good choice! Hang in there!
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I'm glad you don't have any tumours TP and thanks for keeping us in the loop.
The vein discomfort for me is common and it always takes someone with lots of experience to do it right. Its good they used a method that worked best for you.
The vein discomfort for me is common and it always takes someone with lots of experience to do it right. Its good they used a method that worked best for you.
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My now 11 yr old daughter was hospitalized for a week last year with some bizarre neurological symptoms that no one had seen or heard of (every time she drank liquid, it poured out her nose, she couldn't swallow, slurred speech, etc.)....long story short, a bizarre virus attacked several nerves in her brain, causing them to swell and the odd symptoms. She did a few days of IV steroids and complained bitterly about the IV and the way they felt coming into her arm. So, perhaps that's what you are feeling, though after the traumatic IV experience you had (I'm sooo sorry!), no wonder you are hurting! Thrilled there are no tumors and hope that the LP results give you some answers...
Continuing to send prayers and hugs!
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