Discussion Topic
I'm thinking of calling the neuro...
Posted on 11/02/09, 10:27 am
Because I generally don't feel well. Seems like the advice I would give to anyone else is call your neuro. But I am a do as I say, not as I do kind of person. I think next week I will call. I think it is unfair to the doc not to say something...she's treating my MS to the best of her ability, it seems wrong not to say anything. Ik kind of hinders her ability to treat my MS to the best of her ability.
I trust the nurses at my new infusion center, I did not trust the nurses at the last one. I think if I say anything at the infusion they are obligated to call the neuro to get permission to do the infusion, so I might as well call first?....before I drive out there. Or I can call the nurses at the infusion center and ask if its worth calling the doc? My deadline is next week to decide what to do & which way to do it.The nurses at my new infusion center are are so much more trustworthy than the last infusion center....did I tell you I feel safe with them, which is a sense of "safety" I did not feel at my old infusion center. Did I also tell you that at my last infusion there was a lady who had also been a previous employee at the hospital of my last infusion center and even though she too gets routine infusions she will not do it at the hospital I went to and we both worked at previously. She drives to this one too.
I'm not at all adverse to doing the infusion, actually would like to see if the same things happen with this one as the last one. And if anything improves. The doc offices has nurses I can call and ask too...so I am full of options. I will do something next week! My last MRI was March 08. My next doc appointment is Febuary 09. There was no change in last MRI, I had only been on Tysabri for 5 months & I was seeing spots I was concerned about...I think those spots were hormonal. Hormones play havoc on MS symptoms. I would kind of like to wait for her to order it at my feb appointment.
At the last infusion had a 2 day headache for the first time after an infusion, the first 2 days was continuous after that it was intermittent for the rest of the month. Normally I can be sleepy after an infusion, but I have never gotten a headache after the infusion. I have intermittent pain in my right eyeball that just makes me want to pull it out of the socket and wipe the back of it off. That was already my weaker eye, so its still the weaker eye. I don't notice change in vision in that eye, its still the weaker eye. That started after the last infusion & I thought I would wait until my period was done, because my hormonal cycle plays havoc with sensation symptoms.
It continues after my period. That again is something, I question did I always have that and I'm just noticing it?
The infusion before the last one the sensations in my feet changed. But it was such a varying change I thought I would let it settle down to something stable before I said anything. The same day before my last infusion, my knees became as flexible as before MS. If my knees & my feet would do the same thing it would be great.
Now my feet feel heavy mostly, it different than before...but its been almost 2 months so I'm not sure if I remember exactly how it was before? Its more stable situation than last month.
I'm not sure if the changing sensations are the way it heals or is this worsening, its a change not worsening of an existing symptom and its not new either. I have had time were it felt like this before. I'm undecided.
My next infusion is the 16th. I'm not at all adverse to doing it &to see if things settle down to something stable, but as I said it seems unfair to the doc who is treating my MS to the best of her ability to not =t say something....
See why I was diagnosed so late & why I have trouble calling? I have to figure out what it is before I call first & how to treat it.....my guess is MRI before the infusion.
I trust the nurses at my new infusion center, I did not trust the nurses at the last one. I think if I say anything at the infusion they are obligated to call the neuro to get permission to do the infusion, so I might as well call first?....before I drive out there. Or I can call the nurses at the infusion center and ask if its worth calling the doc? My deadline is next week to decide what to do & which way to do it.The nurses at my new infusion center are are so much more trustworthy than the last infusion center....did I tell you I feel safe with them, which is a sense of "safety" I did not feel at my old infusion center. Did I also tell you that at my last infusion there was a lady who had also been a previous employee at the hospital of my last infusion center and even though she too gets routine infusions she will not do it at the hospital I went to and we both worked at previously. She drives to this one too.
I'm not at all adverse to doing the infusion, actually would like to see if the same things happen with this one as the last one. And if anything improves. The doc offices has nurses I can call and ask too...so I am full of options. I will do something next week! My last MRI was March 08. My next doc appointment is Febuary 09. There was no change in last MRI, I had only been on Tysabri for 5 months & I was seeing spots I was concerned about...I think those spots were hormonal. Hormones play havoc on MS symptoms. I would kind of like to wait for her to order it at my feb appointment.
At the last infusion had a 2 day headache for the first time after an infusion, the first 2 days was continuous after that it was intermittent for the rest of the month. Normally I can be sleepy after an infusion, but I have never gotten a headache after the infusion. I have intermittent pain in my right eyeball that just makes me want to pull it out of the socket and wipe the back of it off. That was already my weaker eye, so its still the weaker eye. I don't notice change in vision in that eye, its still the weaker eye. That started after the last infusion & I thought I would wait until my period was done, because my hormonal cycle plays havoc with sensation symptoms.
It continues after my period. That again is something, I question did I always have that and I'm just noticing it?
The infusion before the last one the sensations in my feet changed. But it was such a varying change I thought I would let it settle down to something stable before I said anything. The same day before my last infusion, my knees became as flexible as before MS. If my knees & my feet would do the same thing it would be great.
Now my feet feel heavy mostly, it different than before...but its been almost 2 months so I'm not sure if I remember exactly how it was before? Its more stable situation than last month.
I'm not sure if the changing sensations are the way it heals or is this worsening, its a change not worsening of an existing symptom and its not new either. I have had time were it felt like this before. I'm undecided.
My next infusion is the 16th. I'm not at all adverse to doing it &to see if things settle down to something stable, but as I said it seems unfair to the doc who is treating my MS to the best of her ability to not =t say something....
See why I was diagnosed so late & why I have trouble calling? I have to figure out what it is before I call first & how to treat it.....my guess is MRI before the infusion.
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Reply #1 11/02/09 10:31am
And my brain is kind of "fuzzy" feeling...I'm just writing this all down because I am going to use it post to prepare notes from IF I call next week. -
Reply #2 11/02/09 10:36am
note are my "thing". At last appointment I asked doc to switch top copaxone, but I was flexible about doing this but the bottom line was I was not going to that old infusion center again. That was non-negotiable. I had a sheet written out of pros & con's for each. I am always very prepared & I don't think I trust my memory. So as I read a list of my concerns & thoughts...they were notes for me so I didn't read them all, she asked if she could have them. I said sure as long as she understood they were notes for me. I pretty much prepare notes for everything I can. -
Reply #3 11/03/09 6:06am
I'm thinking the headache & eye pain might have something to do with too much time in front of a computer. Yikes! I guess I will have to persue that possibility this week. See if they go away with limited time at computer. Email still needs to be checked so I doubt it can get less than minimal. -
Reply #4 11/04/09 7:54am
Eye Strain I think. Limiting my computer time yesterdey day helped a lot. Going to Optometrist today to see if I need a new prescription. Limiting computer time made such a difference yesterday, I will keep trying to do that...but its hard for me! Not likely to call neuro about it now or tell the infusion nurse. A headache from eye strain is not one of the 3 questions. The sensation change in my feet, isn't new or worsening, doesn't feel so significant now that my head is not aching so much, that again, like last month I will wait if it does something more definite before/if I say anything. A drastic doesn't feel the same,like numbness, I would say...but tingling to heaviness I will just mark up to one of those MS daily change things....
Sometimes I think I should just rent a horror movie & get my excitement there instead. -
Reply #5 11/05/09 7:20am
I went to the eye exam. My last eye exam was 3/09 not 3/08. I didn't get new lenses because the new lenses did not improve my vision last time..so I didn't think they were necessary. I was concerned that even if they don't improve my vision, I might have needed them for eye strain. He said no that wouldn't cause eye strain. I don't wear my glasses in the house or working on the computer and I thought that might cause eye strain and headaches. He said no that won't and he said with my vision, its best that I don't wear glasses while working on the computer. The computer is just far enough away for me to see best.
So I'm not causing the headaches by not getting new lenses & I didn't get them this time either. Working on the computer will cause eye strain, so limiting that would be & is helpful...
What was interesting was that I only got 2 out of 10 color dot numbers in my right eye. So my color vision is not good. When I got my eyes checked in March of this year I don't think I got any wrong....
He didn't say this, I said it. I might have some ON going on in my right eye for such a change in color vision. That might be what is causing my headache & made me feel like I wanted to pull my right eye out of its socket...that might have been ON. That's my weaker eye, so it is normally blurry, so I didn't notice a change in vision its always weaker. Now I have evidence that the color vision has gotten worse.
I have to answer yes to one of the 3 infusion question. I have had worsening symptoms. I think I will call the neuros office to report it & come clean about the rest. The headaches and change in sensations in my feet.
I'm not a good conspirator, I come clean to easily.
I'm sweating a little bit about whether to tell her IV steroids are ok. They make me very emotional I cried for days my first time, when I was just diagnosed, looking for a job because I had been laid off then the steroids were just too much.
Since then I have refused to do them but will do oral because the oral make me less emotional. So I'm more tired now, I've had 5 years to get used to this, I'm on disability so IV steroids won't cause the strong emotions they did the first time - so I'm ok with them. I know she likes them for vision relapses. At last appointment she said she would prescribe oral....believing I wouldn't report if IV steroids was the only option...
So how do I say IV steroids are ok with out suggesting it, if she doesn't think about them first?
Life is full of conflicts like this. -
Reply #6 11/05/09 7:21am
Pre Tysabri my last 3 relapses were 14 months apart. If this is a relapse, it is 12 months since the last one. -
Reply #7 11/05/09 3:00pm
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Reply #8 11/05/09 3:13pm
Next Ty infusion remained scheduled for 11/16. -
Reply #9 11/07/09 5:39pm
2nd Day of Steroids, these stereoids are not affecting me as I expected and I'm worried. Worried that I have more than one thing going on. My visions most definitely improved by the steroids, but I still have a headache that throbs when I breath in and it is tough to move my limbs arms and legs. I'm not hungry. My blood pressure in 2 day has gone from 120 to 106. I think I have ON from MS and something else going on. Anyone else affected by steroids this way? Its only been two steroid infusions. I'll get done with the IV steroids on 11-10. Do the Taper from then until 11-16 the follow doc appointment is 12-10.
I'm concerned. Theses steroids are not having the effect I expected. I expect insomnia, munchies, emotional roller coaster. I have insomnia, sort of. Too tired to do anything but lay down and try to sleep, but don't sleep. I expected to be manically cleaning the house by now. I just want to lay down and sleep. No munchies no emotionally roller coaster, just a headache that throbs when I breathe in & a left eye ON that is not causing it
Admittedly, I don't have heat control in my apartment and the weather turned from cold to warm, so the inside temperature does not adjust well, its still heating as if it were cold. The temp in here is above 80 deg, when I had gotten used to fall weather temps..
Its only been 2 days of IV steroids. Anyone else affected this way by steroids? I'm concerned about driving to hospital tommorow not because I can't see, because I am so tired. 12-10 to doc appointment seems far away.
Tell me stories of your steroid experiences please. I was not this tired before the steroids. Except for the ON steroids are making it worse, not holding until improvement. -
Reply #10 11/07/09 5:43pm
IV steroids until 11-10. Taper until 11-16. Ty infusion 11-16. Doc follow appointment 12-10. Perhaps I should cancel TY infusion and call doc to request an MRI? Perhaps I should give it more time, just how much more time?
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