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
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
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.....
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!
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....
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,
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.
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....
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!
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.
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