Aa
this is a rant
I don't know what to do. I'm so angry that I could just spit ...... Got a call yesterday from the MS nurse, saying that the neuro DID know of my being JC positive. She will discuss it with me on my next appt. which in JULY !!!!!
I have to wait 4 *amn months to be told NO I can't use Tysabri, or yes I can, but here are the risks....... I can't wait that long.
If it is NO, then move on, and lets talk Gilenya or something else. But to make me wait 4 more months is unacceptable to me. I did phone them and leave a message saying that very thing. I have not heard back yet.
I just don't know where to turn now. Any suggestions ???
So angry
Candy
How come no one is responding to my post about Nabilione ???
I have to wait 4 *amn months to be told NO I can't use Tysabri, or yes I can, but here are the risks....... I can't wait that long.
If it is NO, then move on, and lets talk Gilenya or something else. But to make me wait 4 more months is unacceptable to me. I did phone them and leave a message saying that very thing. I have not heard back yet.
I just don't know where to turn now. Any suggestions ???
So angry
Candy
How come no one is responding to my post about Nabilione ???
Oh candy, so sorry to hear that about the Tysabri……..
I'm just not familiar with Canadian health laws so afraid I'm not much help except a shoulder to lean on and whine to…..
Hugs
I'm just not familiar with Canadian health laws so afraid I'm not much help except a shoulder to lean on and whine to…..
Hugs
I was hoping you would chime in here DV, as a noted authority on Life with MS in Western Canada :-)
Candy, this might be useful:
https://www.divisionsbc.ca/CMSMedia/Divisions/DivisionCatalog-south-island/PiC/Neurology%20Practice%20Summary%20V1%20Nov%202013.pdf
https://www.divisionsbc.ca/CMSMedia/Divisions/DivisionCatalog-south-island/PiC/Neurology%20Practice%20Summary%20V1%20Nov%202013.pdf
I wasn't happy with the neuro I saw last year, so I asked to be transferred within the clinic. I'll meet my new neuro in a couple of months unless I need them sooner. She is within the same clinic. I prefer to remain with the MS clinic if at all possible, however, if for some reason it does not workout with her, I have the right to be referred to a general neuro in the community if a request. You should be able to do the same, I realize you're in a smaller city and resources are more limited, but that doesn't mean there are no options. I'd encourage you to explore this. Although most would probably agree that a MS specialist is preferable in most cases, a general neuro is certainly qualified to treat MS, and you may find someone more responsive elsewhere.
Hi Candy :-)
It suc*ks that you're having a hard time with your medical team. I'm not sure how things work north of the border, so I don't know if you can shop around for a new team. But if you can, I would...
As to the drugs, I was on Tysabri until A) I converted to JCV + and B) It stopped working.
THe way my doc explained the DMDs, on a strength scale of 1-10, Tysabri was about a 10. Other DMDs, like Tecfidera, were about an 8 or 9. THe CRABs were in the 7ish range.
When we were in need of a new med for me he did not want to slide down the power scale, so we eliminated tecfidera. Had the reason for my stopping just been the JVC we would have gone with Tecfidera. But because Tysabri had stopped working he wanted to stay on the same level, so we went with Rituxan.
Kyle
It suc*ks that you're having a hard time with your medical team. I'm not sure how things work north of the border, so I don't know if you can shop around for a new team. But if you can, I would...
As to the drugs, I was on Tysabri until A) I converted to JCV + and B) It stopped working.
THe way my doc explained the DMDs, on a strength scale of 1-10, Tysabri was about a 10. Other DMDs, like Tecfidera, were about an 8 or 9. THe CRABs were in the 7ish range.
When we were in need of a new med for me he did not want to slide down the power scale, so we eliminated tecfidera. Had the reason for my stopping just been the JVC we would have gone with Tecfidera. But because Tysabri had stopped working he wanted to stay on the same level, so we went with Rituxan.
Kyle
Hi doll, I have been on Tecfidera since last May. I had issues about 3 weeks into the full dose and had a lot of stomach pain and nausea. Had to go back to the starter dose and work my way back up to the max dose over a 6 week period.
Other than occasional flushing and prickly rash that goes away with an aspirin I have had few side effects.
Having said that I have had issues with low absolute lymphocytes. They got to 0.6 and I reached 0.5 my neuro was taking me off.
Fast forward a few months and my count is finally in normal range and I only have one more set of monthly testing then I will go to testing every 3 months.
As you may have heard there was a PML death in the UK in October from Tecfidera. The patient had abs lymphs well below 0.5 for several years however so if you have regular blood work to keep an eye on it it shouldn't be a problem.
I don't know much about Gilenya but there was a PML case linked to that last month but the patient did not die.
I don't know which way you'll go but if you have any questions about Tec just let me know.
Hugs,
Corrie
Other than occasional flushing and prickly rash that goes away with an aspirin I have had few side effects.
Having said that I have had issues with low absolute lymphocytes. They got to 0.6 and I reached 0.5 my neuro was taking me off.
Fast forward a few months and my count is finally in normal range and I only have one more set of monthly testing then I will go to testing every 3 months.
As you may have heard there was a PML death in the UK in October from Tecfidera. The patient had abs lymphs well below 0.5 for several years however so if you have regular blood work to keep an eye on it it shouldn't be a problem.
I don't know much about Gilenya but there was a PML case linked to that last month but the patient did not die.
I don't know which way you'll go but if you have any questions about Tec just let me know.
Hugs,
Corrie
Hi guys, this is a continuation of my life saga. And am getting quite distressed over it. It looks like the Tysabri isn't a go for me. I am JC positive at .94 as my numbers, and they won't give it to me. I was a little agressive on the phone today until I started to cry and then it wasn't the best conversation.
While talking to the MS nurse who did not call me, but I called her instead. She looked at the file ( finally) , and said the Neuro had recommended Tecifedera for me instead. I am JC positive, and what I read so far, that isn't really a good one for me. I asked about the GIlenya, and it wasn't marked in the file as an option, so. supposedly next week, she will talk to the Neuro and see where we go from here.
I told her I was tired of being shifted around, and degraded by these people. I said that they are alot of the trouble with us folks because they don't seem to want to try and help, or that is what I have noticed. Apparently Neuro also mentioned that I could go back to UBC Vancouver, and see them for a second opinion. I lost it then, said that I have seen every Neuro over there, and I don't need to see them again. It is an all day thing, but to no result. So, they think I am being difficult.
So, can anyone give me any more advice or experiences with any of these drugs that they are looking at. Mainly Tecifedera ????
Thanks,
Candy
While talking to the MS nurse who did not call me, but I called her instead. She looked at the file ( finally) , and said the Neuro had recommended Tecifedera for me instead. I am JC positive, and what I read so far, that isn't really a good one for me. I asked about the GIlenya, and it wasn't marked in the file as an option, so. supposedly next week, she will talk to the Neuro and see where we go from here.
I told her I was tired of being shifted around, and degraded by these people. I said that they are alot of the trouble with us folks because they don't seem to want to try and help, or that is what I have noticed. Apparently Neuro also mentioned that I could go back to UBC Vancouver, and see them for a second opinion. I lost it then, said that I have seen every Neuro over there, and I don't need to see them again. It is an all day thing, but to no result. So, they think I am being difficult.
So, can anyone give me any more advice or experiences with any of these drugs that they are looking at. Mainly Tecifedera ????
Thanks,
Candy
Thank you all, am waiting till Monday, and will be calling again. Will keep you posted. As far as the "Nabilione" , you are right Kathy, yes it is a synthetic THC to help a person to sleep. But, I don't find that it really does anything , It is a very small dose , .25 to start, they wanted me to take 2 a bedtime, but then I found out that it makes me a little edgy, so, wasn't a good entry into bed. LOL ..... so, I don't smoke it, and don't want to. THe whole idea is kinda weird for me anyways, but I kinda tried this for my family as they were pushing for it. So, I agreed with it , for now.
They also changed the "protocol" on Zoplicone and it is only one 7.5 pill at night. I was and had been on 2 for about the last year or so, and actually was sleeping better, now they say it makes you impaired for longer than 12 hous after taking it. So, they just cut the dose in half and didn't really say anything about it either. So, thank goodness for "Google" , that is where I get my info from most often.
So, we are having other issues too, but this is enough to talk about right now.
thanks again, it means alot,
and I take it all to heart.... and I love to fight for what I need, I am a Leo afterall.
((hugs))
Candy
They also changed the "protocol" on Zoplicone and it is only one 7.5 pill at night. I was and had been on 2 for about the last year or so, and actually was sleeping better, now they say it makes you impaired for longer than 12 hous after taking it. So, they just cut the dose in half and didn't really say anything about it either. So, thank goodness for "Google" , that is where I get my info from most often.
So, we are having other issues too, but this is enough to talk about right now.
thanks again, it means alot,
and I take it all to heart.... and I love to fight for what I need, I am a Leo afterall.
((hugs))
Candy
Sorry your going thru all this crap but everyone is right gotta be pushy when it comes to your health. I would not want to wait either when it comes to meds.
I saw your post on nabilone but like everyone else not familiar with it just know its synthetic marijuana? Have you ever tried mj smoking or eadibles? I have tried both ways and didnt like the feeling but it did manage the pain I know I couldn't take it daily and continue to function normally.
hope you get answers quickly about tysabri or gilenya
kathy
I saw your post on nabilone but like everyone else not familiar with it just know its synthetic marijuana? Have you ever tried mj smoking or eadibles? I have tried both ways and didnt like the feeling but it did manage the pain I know I couldn't take it daily and continue to function normally.
hope you get answers quickly about tysabri or gilenya
kathy
COMMUNITY LEADER
Hey babe,
I saw your post on Nabilione but i hadn't anything to pass on, i don't have anything other than a HUG for this post to offer to you either.......sorry!
Hugs............JJ
Maybe it's time to bring back bad neuro's Friday roasting?
I saw your post on Nabilione but i hadn't anything to pass on, i don't have anything other than a HUG for this post to offer to you either.......sorry!
Hugs............JJ
Maybe it's time to bring back bad neuro's Friday roasting?
Elizabeth Cohen wrote a great book called The Empowered Patient. A big help when it comes to getting the care we deserve.
http://www.elizabethcohen.com
http://www.elizabethcohen.com
Yes, it's hard to do that, and unpleasant in the extreme. You're right--we shouldn't have to. But sometimes we do.
When it comes to a choice between being tough and insistent or letting my health suffer, there's only one answer for me.
ess
When it comes to a choice between being tough and insistent or letting my health suffer, there's only one answer for me.
ess
I would be angry too. I do not respond to posts I know nothing about. You are doing the right things. Waiting is always hard. Even waiting to find if I continued on one chemo or changed to the PARP was hard and it was just a couple months.
Alex
Alex
Sorry, Candy. That's all just wrong. I agree with Ess that being the pushy customer is a good idea, but I can also see how it can be hard to do that. And why should you have to anyway? It just produces more stress which you don't need. Sorry you have to deal with this, hugs. Jodi.
It s*cks that you are dealing with this. I agree with ess that it's time to seek better care. I would also agree that it's better to have at least one foot on the other side before burning this particular bridge.
I went through a similar experience with MS Doc #1. He did my forst LP and I wanted those results before I moved on to MS Doc #2, my current doc. We don't have to deal with bad care.
Kyle
I went through a similar experience with MS Doc #1. He did my forst LP and I wanted those results before I moved on to MS Doc #2, my current doc. We don't have to deal with bad care.
Kyle
I hate it when I have to be that pushy customer. It would be so much nicer if everyone I deal with responded professionally, promptly and courteously. Most of the time this does happen, I'm glad to say.
Occasionally, though, I run into trouble such as Candy describes, and then I'm forced to turn into a tough and persistent lady, becoming very assertive, bordering on aggressive. All done politely, of course, and with the professional approach I wish had been accorded to me. Persistence is most important, because whoever you are dealing with is counting on wearing you down so that ultimately you'll give up and go away. So don't play into that. Just keep calling and requesting what you need, responding to comments or answers such as you describe with, 'Thank you, but I need such and such now.'
We have to take care of ourselves in this world. I have found that biblical claim that the meek will inherit the earth sure doesn't work in the here and now. If you have to burn some bridges in the process, well, you do, and whatever bridge it was wasn't worth saving.
So I'm urging you to rectify this situation, which has been a pattern in your description in the medical care you receive. Call the doctor's boss, write letters to anyone and everyone, go public if necessary. All the while, of course, seeking out better medical help on a permanent basis. You don't have to just put up with the treatment (more ways than one) you've been getting, so don't.
ess
Occasionally, though, I run into trouble such as Candy describes, and then I'm forced to turn into a tough and persistent lady, becoming very assertive, bordering on aggressive. All done politely, of course, and with the professional approach I wish had been accorded to me. Persistence is most important, because whoever you are dealing with is counting on wearing you down so that ultimately you'll give up and go away. So don't play into that. Just keep calling and requesting what you need, responding to comments or answers such as you describe with, 'Thank you, but I need such and such now.'
We have to take care of ourselves in this world. I have found that biblical claim that the meek will inherit the earth sure doesn't work in the here and now. If you have to burn some bridges in the process, well, you do, and whatever bridge it was wasn't worth saving.
So I'm urging you to rectify this situation, which has been a pattern in your description in the medical care you receive. Call the doctor's boss, write letters to anyone and everyone, go public if necessary. All the while, of course, seeking out better medical help on a permanent basis. You don't have to just put up with the treatment (more ways than one) you've been getting, so don't.
ess
I did read that post, but as I'd never heard of nabilone I didn't have anything constructive to add. My guess is you may have introduced a lot of people to the name.
That is incredibly frustrating that they expect you to wait that length of time. I'm glad you were proactive and called them. It's not fair on you, but I can only suggest lather, rinse, repeat. You never know when they might have a cancelled appointment. It shouldn't come to that, but since it has, you need to be the 'pushy customer'.
That is incredibly frustrating that they expect you to wait that length of time. I'm glad you were proactive and called them. It's not fair on you, but I can only suggest lather, rinse, repeat. You never know when they might have a cancelled appointment. It shouldn't come to that, but since it has, you need to be the 'pushy customer'.
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