Does anyone know the answer for this.
If a person has the MRI done with Gad contrast does only recent activity show up as the white spots? Or can old stuff show up as white too? My 1st MRI 2 1/2 years ago was w/o contrast, and this recent one is with gad contrast. This new one shows alot more, and it is obvious that the radiologist's reported more stuff this time around. Maybe I am just looking for more reasons for all of this. I am still having a difficult time absorbing and understanding this diagnosis.
I await the Avonex Rx to come in on Monday, first Shot is at the MD's office on 12/15/07. Does anyone know how many days later or if immediately side effects show up? I just returned to work, and I am nervous about being subject to any effects while in the office.
As Always...your responses are sooooooooooooooo appreciated..
Hi, I still owe you an answer from the first time you posted. I just found it again when I bumped up a thread from a month ago or so.
First question: The older lesions will show up on both the plain MRI done without contrast and on the one done with contrast. The old lesions (older than 6 weeks or so) will show up as bright spots, but not as bright as the new "enhancing" lesions. The report from this newest MRI (the one that was done with contrast) should have stated that the number of older lesions was increased over the one 2 and 1/2 years ago. If there were enhancing areas these should also have been described, but could not be compared to the older images. Did the radiologist have the old MRI to compare to?
In general the Avonex shows it's side effects, if you are going to have any, between 4 and 6 hours after the shot. But, you won't really know until you start the med and see what your body does. The training RN should fully prepare you to premedicate with something like Ibuprofen an hour before the shot and then every 8 hours for ibuprofen and 4 for acetaminophen for the next day or so. Ideally you want to use something that blocks prostaglandin production (Ibuprofen, Naproxen, etc) and will be better at relieving inflammation. Any of the non-steroidal anti-inflammatories should work. I use acetaminophen because I am truly allergic to all NSAIDS. From the beginning my slightly stiff and sore muscles lasted about 18 hours after the shot. That is descreasing some now. For me it is nothing like the flu, much more minor. For other people it's better or worse than that.
Chrissy - Sometimes it is truly hard to wrap your mind around all of this. I know I missed a great number of your posts when I was out last month, but if there are any questions I can help with now, I will be glad to try. Have you talked with SL (sllowe)? She really struggled against the diagnosis for a long time and would very much understand what you are going through.
While I was in the hospital I sent my husband on a desperate search for the MRI cd. He was unable to find it, but I called the Radiology place and managed to have my husband pick up the report. So the radiologist was unable to see the differences. My neuro and primary said that the new report was much worst than the original report in 05. It has to make sense because this event that i had landed me in the hospital for 8 days. I had an episode where so many symptoms showed up at once. It was very scary. My doc is going to give me the Avonex shots as my insurance co, (HMO) is giving me and him headaches with all the red tape for authorization of not only the nurse-shot training but the medication itself. My primary doc says this way he can monitor side effects. I guess I should take some Advil an hour or two before I go to his office. I take it out of the fridge too ..right? How often do Docs recommend follow up MRI's to see if this stuff works?
I have definately been feeling more like myself, especially in the last 3 days. I feel as if I lost out on 1/2 the month of October and all of November. It's like a foggy memory. I guess the valley of depression I was in did that.
I am making progress in walking. The other symptoms I am not so worried with as they come and go. I had lost walking for awhile. I graduated out of the bed and to a walker, 2 days before hospital discharge, 2 weeks with walker at home, then to cane (got some flack about using it at work, my boss thought that if I used it I would be dependant upon it forever, it hasn't been easy hobblying around the office.), but finally today was the best walking day yet, working on getting the left leg to bear more weight. I hope this progress continues. Just really terrified of driving. I feel I could drive, but that night when all this came on suddenly, frightens me. I don't want to have something show up while driving. How do people drive if they have MS? It's so unpredicable. My Dad said think of the guy who drives with a heart prob, he doesn't think of it 24/7, it's in God's hands, right?
The Avonex should be at least room temp and I say alt least body temp before getting it. I warm it thoroughly in my hand before injecting. Heather told me she warmed it using a heating pad on low and this helped reduce the side effects. I can't recommend the heating pad unless you carefully measure the temp and don't warm it more than the package insert states, but hand warming would be completely safe.
Yes, definitely take the full dose of Advil (at least 600mg if you can tolerate three pills) an hour before the shot. You actually should clear all this with your doctor or by calling the Biogen-Idec Hotline. If you don't have it, I'll get it for you so you can call tomorrow - if you want.
What an assinine attitude to take about an assistive device! Your boss sounds like a dufus.
The HMO delay is amazing! The cost/benefit is obvious and I've heard of very few insurances that won't cover it. Sounds like you need to begin a grievance or appeals process.
Every neuro has his own protocol about follow-up MRI's. It's a question to put to your doc.
I used to take Avonex and Quix is right. Warm it up in your hand thoroughly before injecting. I always took Tylenol several hours before my shot and continued it as scheduled intervals through the next 24 to 48 hours.
Some people do their shots at night before they go to bed, so they can sleep through some of the flu like side-effects that are common to an Interferon like Avonex. Don't let that scare you away. Avonex has proven to be an excellent drug in preventing further relapses. It sure is alot better to give yourself a shot once a week, than everyday.
Remember to rotate injection sites. I over used my left leg, which is my numb leg and it caused me to develop some slight scar tissue, which made getting the needle to penetrate, impossible. Do not hesitate when you give yourself a shot, just do it quickly and you will see how relatively painless the whole procedure can be. Thank Goodness that Avonex provides a very sharp, now smaller needle, that go into the skin like butter. It was such a relief.
Your doctor should check your liver enzymes every six month or maybe more often in his opinion, through a simple blood test. How often he wants to do an MRI is totally up to him. Remember that Avonex is not a cure for MS, but is proven to slow down or even stop the relapses.
Oh, I forgot to add, that I DO agree with Quix about the Naproxen or Ibuprofen. It does seem to help more with any problems from inflammation. Sometimes it can be hard on the tummy, so that's why in my case, I had to use Tylenol.
Good luck to you and I hope that you will post and let us know how the Avonex is going...well just as soon as the insurance company approves the drug. It's an expensive drug...of course they are going to drag their feet. You can file a grieveance and get the approval process speeded up.
I just picked up the Avonex at the pharmacy. All finally went through with the insurance company. I will get my first shot this Saturday at the GP's office around 10:am. He says he want to monitor me for the first month or two's shots for any side effects. Speaking of which, I just got out of the deep (I mean really deep) blues. I don't want to go down depression alley again. I know I probably won't know how I will react to this med but, I am very concerned as it is hard for me to say this, but my mood was really very dismil and I had some terrible thoughts of worthlessness. I had to have my husband get off the couch (he just loves that couch) and ask him to stay with me while I slept because I was actually afraid of my own thoughts. It was good that I was aware of my depressive state. This extreme depression first occurred in the beginning of Sept and lasted for 2 weeks, I got out of it just the week before my daughter's sweet 16 party on sept 29, I was so happy to be happy again.
Then again when I was home from the hospital as I was tapering off the steriods, I hit another low that continued for almost 3 weeks. I usually have a mood change when I go off my birth control, which is 2 times a year for menses. ( I have severe endo, so I don't take the placebo, only once in the summer, once in the winter) , but that moodiness only lasts 2 days. I am a little sensitive, and a lil teary, and I can tell in the morning usually that I am gonna be moody.
I mentioned to my doc, the last visit, I was depressed lately but he thought that I would be ok once I got back to my job and regular routines.
I don't want to be overly concerned but I really don't like the low roads, depression is a very bad ride.
You've been through so much and have so much on your plate right now. I'm very glad your doctor will be keeping a close eye on the Avonex shots for a the foreseeable future. He sounds like a good guy.
But Chrissy, I am very worried abut the depression episodes you're having. It's dangerous. You do know, don't you, that depression is very common with MS? Maybe you sort of soft-pedalled it when you last saw your doctor, but you need to tell him forcefully just how bad it gets sometimes. This is nothing to fool with and I know you're scared. I'm scared for you. So please see about get a script for an antidepressant tomorrow. Don't even wait till Saturday if you're feeling very bad. Does your husband know the extent of this? If not, tell him as best you can.
Take care of yourself, Chrissy, and write back soon
The depression is something to be very, VERY aware of. Ess is right, Depression is a primary effect of MS, not to mention a secondary effect from having a chronic disease. Also, worsening depression is a possible and concerning side effect of the Interferon meds. Be absolutely honest with your doctor about the extent of depression and the recent bouts. It is not a contra-indication to using Avonex, but he will need to check on you more often, amybe see about a weekly phone call check on your mental status, between office visits.
May I speak from personal experience? I was taking an anti-depressant long before I started Avonex. Trust me, my life with my ex warranted something for depression....another story for another day.
My doctor told me that the MS modulating drugs can cause depression. I was going on what he said, because at the time I did not have a computer to check things out on the Internet.
He monitored me very carefully in the first six months that i was on Avonex, since one of it's side-effects CAN be depression, (in susceptible people)especially if you START the mediction already depressed. I was not ashamed or embarrassed that I took an anti-depressant. I was just glad that I felt better when I was taking them. I also mirrored my drug therapy with mental health counseling, which helped me tremendously. Having a third party to talk to, was a relief for me.
Now many years later, I no longer take any anti-depressants, but will be starting Copaxone, as soon as I can find another Neurologist. (Just lost the one I had.) Copaxone is known to cause depression in sensitive individuals, so instead of risk dealing with depression, I will be going back on an anti-depressant as I start the Copaxone. I don't want to take any chances, so I am starting anti-depressants therapy before it happens. Just in case.
I totally understand where you are coming from and I hope you know that you will get all the support you need from the people that have been in the place where you are. You still need to lean on the medical professionals and be honest and upfront with them when you "aren't feeling quite right." No one has to deal with depression alone. There is help. Good friends, doctors and family, plus a solid regime of excellent medication, can bring you back to the happiness in life you SO deserve.
I am with you in mind and spirit....you are in my prayers....
Thank you for your post.
I thought I was over this low, only to cry my eyes out at my desk today. The trigger, after all the aggravation to get my HMO to approve things, and I was relieved that I got the next 6 months worth of meds/neuro visits in the clear, I get to my desk this morning to get a mandated change of insurance effective 01/01/08. With high copays, like 1250. per hospitalization, 500 E/R and 100 per specialist. I am really feeling like I am seeing a really bad road ahead. And my GP (I adore my GP) is not a network provider in this new plan. I am not handling any of this stuff well at all. My docs and me literally jumped through hoops since 10/14/07, every single day to get all this covered and now I may be left out. Everyone at work thinks I am some kind of crybaby now, and my coworkers said that if I complain, my boss is liable to not offer Health insurance of any kind. "Be happy you will have insurance" I know I should be, but the idea of coming up with at least 3000 out of pocket before they cover most charges is very steep. I guess this is what everyone who gets some sort of lifelong battle deals with.
I am so worried about losing my job to this MS dx, who would hired me anyway ? and now, I feel like I will be working for so much less now. Can't help to think, even after 10 years of employment maybe this is my boss' way of getting a future disabled person to resign............ :( Really blue today. Chrissy
I've had a bout with vertigo for over two weeks now. At first it wasn't bad, then got worse and I've had the PT for the ear treatment and it has gotten better. I'm still dizzyheaded, the room doesn't spin, but I feel unsteady. I'm having the MRI with GAD on Thursday and then the VNG test on Tuesday. I've never had any kind of dizziness like this before. I'm afraid to drive. Sometimes, I'm just fine, others, I just want to put my head down and go to sleep..... I just want to hear that it's going to be okay.....
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