Well, after "some 'splaining to do to Lucy" ...again. I got my order for meds. They are scheduled for tomorrow. The neuro's office certainly dropped the ball on this one. The scheduler who left early yesterday was out today. I pointed that out to "Nurse" Nancy and she had to go ask the doc what to order?! We shall seewhat tomorrow brings.
Thanks to all for input suggestions and directions. It was very much appreciated.
Ren
The standard has already been pretty well covered, and I'm hoping you got some treatment by now. I had the 1000mg ran over one hour, then 30 min and 30 min over 3 days, then off to an oral taper. I had no idea that 1000mg could even be given in oral form - did you have horrible heartburn from that?
I had bp and blood sugar changes from the iv and taper. There were blood tests run before and during the iv, and I'm guessing it is the combination of those tests and having left residents in charge of me that I later found out someone had actually put a note in my files which caused the next doc to think I was diabetic. An opthamology resident about fainted when she did a pressure test on my eyes during the taper.... I was given three rx drops to counteract that problem.
I hope work gets better for you - wherever it leads you to. Your neuro is right that mental stress is a killer.... I keep telling myself that too. Too bad we can't tell people "hey, you're giving me stress, and my doc told me to stay away from that... so take a hike!".
Thanks for the words of encouragement re the management meeting! As for the office staff ...save your good wishes for them. I will not take no for an answer tomorrow.
I'm glad you are feeling well enough to return to work. It's also nice your fellow employees were helpful and accommodating, sure makes life easier.
Thanks again,
Ren
I'll bet you will get them started tomorrow for sure. I'd tell them that your MS neuro wants you to start them TODAY period.
I was cleared to go back to work today and made it in. I had to use my cane, should have probably used the walker. No one was the wiser since I had just had that car accident. Thankfully everyone was so helpful today and it sure made the day much better than I expected. No one knows about the MS and I want to keep it that way for a while longer since this is a new job. Thanks for asking.
I hope your meeting with management goes well on Monday. I'll sure be thinking of you and praying that you can keep a steady hand and head during it. Most importantly, I hope you can get the IVSM over with so that when you walk in you will have your symptoms under control at least for the most part.
Good-luck with the idiot office staff tomorrow.
Julie
When I had my ivsm, I saw the doctor at 3pmon Thursday. I went to the hospital at 4:45 and had them outpatient through the weekend. It was no big deal since I had started them before the weekend. I am so happy that I did them outpatient. I have two small children and 5 days in the hospital is totally out of the question unless I am dead or dying.
Thanks for the input. As I noted in my rant post, the neuro's office apparently had not even begun the process. My symptoms are doable but as noted previously, my left arm is numb and tingling so much so that it interferes with its use. Add the leg pain and fatigue on top and I'm done.
The mandatory meeting will be a time they will focus on "my progress" since taking my unpaid leave. I also expect to have to meet with management again to discuss how to go forward with my work and job status. I HAVE to be clear headed and not in pain to concentrate and respond appropriately to attorneys. My job may be riding on this meeting.
As for the nuero's personnel and for that matter, the neuro , thinking I "can" wait, I don't know what on Earth gave them that impression. This local neuro is not my favorite neuro but my MS neuro is an hour's drive from me and I didn't want to do the drive while feeling poorly. He (MS neuro) agrees I need the steroids and probably assumes it has already been handled. He's leaving town on Wed and gave me that heads up in cause I needed anything regarding the steroids.
So, tomorrow morning we'll see how things get handled. You may be correct about the comments you made in the rant post..may be time to move on if the staff are too difficult to deal with.
BTW, how are YOU feeling? I hope you are doing better!! You had plans to return to work today, did you?
Thanks for the advice!
Ren
The whole point of getting on the IVSM is to help shorten the symptoms. What are they waiting for? Call them tomorrow and get them off their stick. I don't mind waiting 2 days max and had to do that last time, but my symtoms were not very serious like they were this time so that was acceptable.
Can you believe my old crummy neuro who I fired months ago was the one taking care of me in the hospital. Well, it was a Friday around 3 pm when they ER doc decided I was being admitted and he came off with this "well, you can do IVSM as an outpatient" krap. The ER doc stepped in and said I need to be on the steroids NOW not wait for the weekend to be over since its harder to arrange infusions on weekends. Besides the fact I couldn't walk, just been in a car accident, yada yada.... So, if your symptoms are really bad and you need the meds right now, then make them do what they need to do NOW. If your symptoms are manageable until they can get them arranged, then give them 2 days max (weekends are an issue) then make them get it going.
I hope you will be helped by the steroids. When you get started, keep an eye on your symptoms and if in doubt about what is normal as far as side effects, ask your doctor or even ask us. Take care and let us know how it goes.
Julie
Thanks for the info. I didn't know one could get different side effects with each dose. I would have thought that each round your body would react the same way...whatever was "normal" for you.
I won't know anytime soon as I have not heard from the local neuro yet. I was told Thursday, "it would take a couple of days" . They've had their couple of days, albeit with a weekend thrown in, but I'm still not feeling any better. Guess I'll go call before their office closes...in an hour at 3 pm.
Thanks again,
Ren
Quix already answered your question about the standard dose of IVSM.
You also asked about side effects. I have had 3 treatments this year alone and the side effects have been different each time. The first time it affected my blood pressure, not in the 200/100 like yours, but high. Next time had sweats and weakness. This past week, and I'm still dealing with the side effects, it has been high blood sugar. It is a miracle drug, but there is a price that comes with it.
I hope the reduction of the dose in your case is helpful. Take care.
Julie
Thanks. I thought the "standard dose" was 1000mg. I think their real fear is labile BP that dances its way to the 200s/100s at the drop of a hat without any known trigger. Steroids is a known trigger.
Appreciate the input!
Ren
The "standard dose" of IV Solumedrol used for MS is
1000mg (1 gram) given IV over 30 minutes to hours for 3 to 5 days.
Yes, this dose will give any doc who is not accustomed to seeing MS patients a heart attack. But, my Infusion Center does them all the time and doesn't blink.
This kind of infusion can cause a skyrocket in BP and in blood sugar.
A dosing of 500mg would still be far better at getting the high levels needed to force the Solumedrol into the brain. It's a better option than oral steroids which rarely have much of an effect.
Quix