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When to contact doctor?
Happy New Year to all! I have been lurking in the shadows just observing for a while but need some advice.
When do you decide to contact your doctor when you think you may be replasing? As we know sometimes it can be a bit difficult to determine if what we are experiencing is a temporary episode or we are having a flare.
I'm hesitant to contact for 2 reasons:
1 - If I'm not relapsing I will feel like such an idiot. I don't want be considered crying wolf (at this time I've been 3/3 in the past yr since dx).
2 - If it a relapse I'm torn on doing steroids again. They wreak such havoc on my body at times I'm not sure if just living with the symptoms are better than what comes with the steroids!!
Right now I'm having trouble with mental focus, dropsies, balance, dizziness and chest/esphogeal spasms and all my teeth hurt (new one). My best guess is I'm headed into week 3 of these symptoms becoming more noticeable and adding new ones.
FYI, I've been on Copaxone for 5 months before that Rebif 4 months. DX 2/29/12
I appreciate all your input and suggestions.
Monique
When do you decide to contact your doctor when you think you may be replasing? As we know sometimes it can be a bit difficult to determine if what we are experiencing is a temporary episode or we are having a flare.
I'm hesitant to contact for 2 reasons:
1 - If I'm not relapsing I will feel like such an idiot. I don't want be considered crying wolf (at this time I've been 3/3 in the past yr since dx).
2 - If it a relapse I'm torn on doing steroids again. They wreak such havoc on my body at times I'm not sure if just living with the symptoms are better than what comes with the steroids!!
Right now I'm having trouble with mental focus, dropsies, balance, dizziness and chest/esphogeal spasms and all my teeth hurt (new one). My best guess is I'm headed into week 3 of these symptoms becoming more noticeable and adding new ones.
FYI, I've been on Copaxone for 5 months before that Rebif 4 months. DX 2/29/12
I appreciate all your input and suggestions.
Monique
Glad to hear things have been cleared up with the treatment and again sorry you had to go through that !!
Wellness to you !
Wellness to you !
Thanks for that update - I hope you will start feeling better now that you are doing the solumedrol.
And it is encouraging that maybe the doctor is ok after all.
And it is encouraging that maybe the doctor is ok after all.
Updated...I called office this morning and the nurse was surprised that the er did not do IV and wanted to admit me but the neuro sent orders to home nurse care for 5 day IV starting today with mri and followup with him next week.
To answer question about not seeing my Dr, he's working at hospital this week.
I'm ok with his care so far. Not sure what the disconnect was this time but my previous flares he's been spot on.
Thanks for the input!
To answer question about not seeing my Dr, he's working at hospital this week.
I'm ok with his care so far. Not sure what the disconnect was this time but my previous flares he's been spot on.
Thanks for the input!
I agree that you need an upgrade on eye care. Either a neuro ophthalmologist or, if one is not available, a regular ophthalmologist. Neurologists can't do a thorough enough eye exam and optometrists are more trained for eyeglasses.
So good luck - having had weird stuff go on with my eyes - it's very disconcerting. Keep up with it tho!
Marcia
So good luck - having had weird stuff go on with my eyes - it's very disconcerting. Keep up with it tho!
Marcia
Glad someone at the ER thought things through!! I find it odd that your doctor sent your over to the ER too. Like he / she didn't want to deal with it?!! Are you happy w/ your neuro overall? That alone would give me a reason to start looking for someone else.
I have finally gotten pro-active and in the last new years gotten a new PCP, neurologist and psychiatrist. Much better. Much happier. A pain, but worth it.
BTW, for all - try to keep copies of as many medical records as you can get your hands on. Copies of MRI, blood work, sometimes they'll give you notes on your apppts....
Good luck!
Marcia
I have finally gotten pro-active and in the last new years gotten a new PCP, neurologist and psychiatrist. Much better. Much happier. A pain, but worth it.
BTW, for all - try to keep copies of as many medical records as you can get your hands on. Copies of MRI, blood work, sometimes they'll give you notes on your apppts....
Good luck!
Marcia
Thanks again for the feedback. I'm in the er now and the neuro on call ordered 1000mg of solu-medrol but the er doc refuses to administer that high a dose without admitting me and doing an mri first.
I refused and er doc is reluctantly discharging me. The neuro on call is having me call in the morning to setup a followup.
I'm so tired otherwise I'd have a whole lot more to say about this mess my neuro has started.
I called to report symptoms and I now have doctors going back and forth for hours on end. Ugh!
I refused and er doc is reluctantly discharging me. The neuro on call is having me call in the morning to setup a followup.
I'm so tired otherwise I'd have a whole lot more to say about this mess my neuro has started.
I called to report symptoms and I now have doctors going back and forth for hours on end. Ugh!
Welcome out of the shadows. I'm glad you decided to post a question and introduce yourself. Especially since I also live just east of the Gem City.
Just a guess on my part and I am no expert - from your moving from Rebif therapy to another, I'm guessing the doctor has not found quite the right drug for you to slow or quiet your MS, although it can take six months or longer for the copaxone to really start its work in retraining your immune system.
If you are having symptoms that are new or old symptoms that reappear and either one lasts for more than 24 hours, it can technically be called a relapse. I understand your hesitation to call the neuro again, but I'm glad you did. They really should track your clinical signs to find the bigger picture for your treatment and your MS.
I'm surprised though that the doctor sent you to the ER rather than see you in the clinic. And I'm curious if the ER folks listened to you ... and which hospital network here you used. Like I said, I am a neighbor.
Hopefully you will stick around here and share more of your experiences .. THis is a great group of people, all willing to share their knowledge and persona experiences.
welcome to the group,
Laura
PS I run an MS swim group that meets weekly and would love to have you join us - send me a PM if you are interested and want more details.
Just a guess on my part and I am no expert - from your moving from Rebif therapy to another, I'm guessing the doctor has not found quite the right drug for you to slow or quiet your MS, although it can take six months or longer for the copaxone to really start its work in retraining your immune system.
If you are having symptoms that are new or old symptoms that reappear and either one lasts for more than 24 hours, it can technically be called a relapse. I understand your hesitation to call the neuro again, but I'm glad you did. They really should track your clinical signs to find the bigger picture for your treatment and your MS.
I'm surprised though that the doctor sent you to the ER rather than see you in the clinic. And I'm curious if the ER folks listened to you ... and which hospital network here you used. Like I said, I am a neighbor.
Hopefully you will stick around here and share more of your experiences .. THis is a great group of people, all willing to share their knowledge and persona experiences.
welcome to the group,
Laura
PS I run an MS swim group that meets weekly and would love to have you join us - send me a PM if you are interested and want more details.
you need someone above an optometrist.......they are not trained in this....let me get back to you with some more hints, on a PM.
Thanks for replying... I don't have a regular person who looks after my eyes, I would just be going to see a random optometrist and my experience with them when I had ON was pitiful. I had 3 of them tell me there was nothing wrong and send me away. It was only because a fourth one felt that it was just NOT RIGHT, that I was sent to another one who had the equip for a field vision test and he picked up that it was most likely ON. I'm not sure if I'm up for getting the run-around again....
you might try contacting your eye health care person and ask if they want to see you...perhaps they might put your fears at ease or if they think its important, they might contact your neuro.......sometimes they listen to each other before they listen to us.....it may not be earth shattering at this point, they may want to watch it but i think a call to your eye personnel might enlighten the situation
welcome to our forum also know as the club no one wants to belong to!
welcome to our forum also know as the club no one wants to belong to!
I am new here, this is only my second time posting. So hello all! I was glad to see this question posted, because I am tossing up at the moment whether or not to contact the neuro's office. I was in there on Monday for a check-up - I had an MRI last December that showed nothing new and it's been 12 months since my previous appointment because I have been just fine.
When I was there on Monday, he did all the usual visual checks with me following his finger around. He picked up a nystagmus when my gaze was at the extreme left. He really didn't say much about it at all. In fact, I think it was only the fact that he said something briefly to the student doctor and I actually asked what he said, that he made any mention directly to me. The reason that I asked what he said is because I had noticed it too, so it is not like it took a trained eye to pick it up.
I was able to follow his finger around and he didn't say anything at all about me doing that.
He called the "chief" neuro in (I go to a special MS clinic, so there are a few there) and he also did the test, and asked whether i have trouble with my balance and I said I do not.
After replicating the test myself, following my own finger, I have noticed a significant delay in my eyes being able to regain focus on my finger, if I start with it near my nose - and in focus - then move it quickly away. Until it stops moving, I am seeing double. THe faster I move it away, the more obvious it is. When he did the tests the other day, I did notice that as his finger moved it was slightly double, but I guess I didn't think a lot about it til I started reading about the nystagmus and the other visual problems MS can cause. For the last month or so, there have been a couple of incidents with my focus that I had noticed but didn't give a lot of thought so I didn't mention them at all. One was when I had been getting up from my desk and having trouble focussing on things further away after looking at my computer for a while. It was actually an effort to sort my eyes out. That happened a few times in a few days, but didn't really think about it again.
Today, my eyes feel a muscular-type tired and I feel a little unusual - not dizzy, but just a little unsure. My right eye is foggy, not overly so but noticeable to the point that I keep blinking it to try to clear it but it doesn't work! I had ON in my right eye 2.5 years ago, but the fogginess is not accompanied by the other symptoms I had last time.
So - is there any point talking to the neuro, or will he just think I am an idiot? (And do I care what he thinks when he is being paid to take care of me)? I feel silly cos I was only there a few days ago, so he'll probably think that he put the idea in my head and now I've turned into a hypochondriac.....
When I was there on Monday, he did all the usual visual checks with me following his finger around. He picked up a nystagmus when my gaze was at the extreme left. He really didn't say much about it at all. In fact, I think it was only the fact that he said something briefly to the student doctor and I actually asked what he said, that he made any mention directly to me. The reason that I asked what he said is because I had noticed it too, so it is not like it took a trained eye to pick it up.
I was able to follow his finger around and he didn't say anything at all about me doing that.
He called the "chief" neuro in (I go to a special MS clinic, so there are a few there) and he also did the test, and asked whether i have trouble with my balance and I said I do not.
After replicating the test myself, following my own finger, I have noticed a significant delay in my eyes being able to regain focus on my finger, if I start with it near my nose - and in focus - then move it quickly away. Until it stops moving, I am seeing double. THe faster I move it away, the more obvious it is. When he did the tests the other day, I did notice that as his finger moved it was slightly double, but I guess I didn't think a lot about it til I started reading about the nystagmus and the other visual problems MS can cause. For the last month or so, there have been a couple of incidents with my focus that I had noticed but didn't give a lot of thought so I didn't mention them at all. One was when I had been getting up from my desk and having trouble focussing on things further away after looking at my computer for a while. It was actually an effort to sort my eyes out. That happened a few times in a few days, but didn't really think about it again.
Today, my eyes feel a muscular-type tired and I feel a little unusual - not dizzy, but just a little unsure. My right eye is foggy, not overly so but noticeable to the point that I keep blinking it to try to clear it but it doesn't work! I had ON in my right eye 2.5 years ago, but the fogginess is not accompanied by the other symptoms I had last time.
So - is there any point talking to the neuro, or will he just think I am an idiot? (And do I care what he thinks when he is being paid to take care of me)? I feel silly cos I was only there a few days ago, so he'll probably think that he put the idea in my head and now I've turned into a hypochondriac.....
just be careful and keep track of your steroids. Steroids do a number on your bones if you continue to do a lot of them. I sat with a girl in infusion today who was on them for years and now is paying the price with severe arthritis and bone degeneration.
They are ok occasionally but if your neuro is using them a lot, then its time to question him. Just food for thought for down the road, ok, it sounds like you need them for this, if you are on week 3.
Be sure you keep a journal, or timeline, of when you have what symptoms and what you have done. It's soooo easy to forget days of simple symptoms and even relapses when showing up again at the neuro's. I am guilting of forgetting and days just get by me.
Keep us posted how your treatment goes and when your problems go away, we all learn from each other
They are ok occasionally but if your neuro is using them a lot, then its time to question him. Just food for thought for down the road, ok, it sounds like you need them for this, if you are on week 3.
Be sure you keep a journal, or timeline, of when you have what symptoms and what you have done. It's soooo easy to forget days of simple symptoms and even relapses when showing up again at the neuro's. I am guilting of forgetting and days just get by me.
Keep us posted how your treatment goes and when your problems go away, we all learn from each other
Thanks for you responses. I called and my neuro he said to go to ER and let them know my doctor sent me and list all my symptoms and tell them I need an IV dose of steroids.
I'm rather surprised he's sending me straight to ER and no MRI and all that. This is the first time he's done this. Last time I had MRI and did 3 day infusion at his office.
I'm rather surprised he's sending me straight to ER and no MRI and all that. This is the first time he's done this. Last time I had MRI and did 3 day infusion at his office.
Call them, you are not sounding like an idiot, you can't learn your disease this fast!
Usually the nurse or np at the office can help
Also the national ms site has wonderful advice as well as our health topics here
Hang in there, many if us are still learning our personal passenger, ms
Usually the nurse or np at the office can help
Also the national ms site has wonderful advice as well as our health topics here
Hang in there, many if us are still learning our personal passenger, ms
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I have heard that many Neuros will give the option of going to ER for one hour IV doses for 3 days or they give the option of prescription streroids during a relapse.
Did he offer a prescription instead of going through this??? Has anyone???
Valarie