Aa
an update
Ok guys, went to my appointment today. A nice OLD chinaman, and he actually wanted to hear me. It was such a treat from some of the other people that we have seen. I got lots of news, and it isn't all good. I have an actively progressive MS, and my body has chanaged alot from my visit in January. He was not to happy, but, said there were some options, to try and slow it down.
He did not think that the Copaxone was really helping, but left the decision up to hubby and I. He also talked Tysarbi but did not seem to think it would help much either. We also got alot of hand out papers about a chemo therapy that they use. Has anyone had this done, and if so, was it successful. Did your hair fall out, and did you feel like garbage. ???
So, we have so many things to think about now, and I'm not sure if today is the day, Think I will wait for another day to read that stuff.
Thanks for your shoulders.,
((HUGS))
Candy
He did not think that the Copaxone was really helping, but left the decision up to hubby and I. He also talked Tysarbi but did not seem to think it would help much either. We also got alot of hand out papers about a chemo therapy that they use. Has anyone had this done, and if so, was it successful. Did your hair fall out, and did you feel like garbage. ???
So, we have so many things to think about now, and I'm not sure if today is the day, Think I will wait for another day to read that stuff.
Thanks for your shoulders.,
((HUGS))
Candy
I forgot to tell you all, he called me a "YOUNG CHICK" LOL .....
he was a great Doctor......
Cheers,
he was a great Doctor......
Cheers,
thanks, well, maybe I will just say thanks again for everyone opinions. It is great to be able to live in a country that liberal speech is allowed.
I in NO way intened to offend anyone, I am not that kind of a person. But, having said that I will stand up for myself.
There were a few people who took offense and for that I am sorry,...... and confused..... if you were from England, you would be English, if from Mexico you would be Mexican, fron Canada, Canadian, so what was wrong with a man from China being a Chinaman??? That was a loving comment, and he was so sweet.
He reminded me of the trainer on the Karate Kid, ( remember, wax on, wax off) ...... that is the way I looked at him.
He was funny, and engaging, and seemingly caring of what we had been through. He too called himself an old chinaman, and he had a disablility too, walked with bow legs, and to top it off, he laughed so much about himself, he left the room at one time, and locked the door. We all laughed at that, and he went and got a secretary to unlock it, instead of knocking on the door, and we could have let him in.
So, there was never intention to offend anyone, that is not my nature.
So, maybe you can understand now .....
Candy
I in NO way intened to offend anyone, I am not that kind of a person. But, having said that I will stand up for myself.
There were a few people who took offense and for that I am sorry,...... and confused..... if you were from England, you would be English, if from Mexico you would be Mexican, fron Canada, Canadian, so what was wrong with a man from China being a Chinaman??? That was a loving comment, and he was so sweet.
He reminded me of the trainer on the Karate Kid, ( remember, wax on, wax off) ...... that is the way I looked at him.
He was funny, and engaging, and seemingly caring of what we had been through. He too called himself an old chinaman, and he had a disablility too, walked with bow legs, and to top it off, he laughed so much about himself, he left the room at one time, and locked the door. We all laughed at that, and he went and got a secretary to unlock it, instead of knocking on the door, and we could have let him in.
So, there was never intention to offend anyone, that is not my nature.
So, maybe you can understand now .....
Candy
Hi, Candy,
The only posts of yours that I see are the first one and the one thanking Sarah for her comments -- perhaps there was a glitch when you posted?
Claire
The only posts of yours that I see are the first one and the one thanking Sarah for her comments -- perhaps there was a glitch when you posted?
Claire
I wrote a reponse to everyone for responding.....and thank them, and said a couple of other things.
What happened to that post ????
What happened to that post ????
Before this discussion gets too far afield, I'm wondering if anyone has insights into Candy's original questions about treatment.
Claire
OLD Moderator
Claire
OLD Moderator
fwiw - I'm referred to as the white girl by my friends who are not. No harm in it, and very accepted. In my environment the older chinese doctors are very distinguished and sought for their distinguished heritage and world renowned practice - it's a huge compliment. Suggesting it's bias, or something other than the context in which the original post was written in mischaracterizes the initent of the discussion.
so while up changing my dressing, getting coffee (was not partaking at Alex's birthday party due to exhaustion although enjoyed watching)
I read Candy's post one more time and have to say that while I thought we were our wonderful forum family, suddenly it seems we have to be politically correct even here and somehow that rubs me wrong. Do we have to make even our posts closed to the outside world just to talk among us like family?
has the world come down to that? is the world so bored that googling the posts of people with a disease hold virtual conversations in, becomes something they have to hold a microscope to and complain about us afterwards? I no longer know and since I am OLD and hold dear the poem about OLD ladies wearing purple, I no longer care, and I'll agree with ess, OLD is good (blowing out my 71 candles again) and is in the dictionary. When I grew up, it was a compliment to be OLD.
hang in there, Candy!
OLD lady going back under her rock to mend in peace and quiet
I read Candy's post one more time and have to say that while I thought we were our wonderful forum family, suddenly it seems we have to be politically correct even here and somehow that rubs me wrong. Do we have to make even our posts closed to the outside world just to talk among us like family?
has the world come down to that? is the world so bored that googling the posts of people with a disease hold virtual conversations in, becomes something they have to hold a microscope to and complain about us afterwards? I no longer know and since I am OLD and hold dear the poem about OLD ladies wearing purple, I no longer care, and I'll agree with ess, OLD is good (blowing out my 71 candles again) and is in the dictionary. When I grew up, it was a compliment to be OLD.
hang in there, Candy!
OLD lady going back under her rock to mend in peace and quiet
Not feeling serious this morning, about MS or anything. That can all wait.
What I want to know is why no one noticed that Candy called her doctor old. "OLD," actually!
I love it! Personally I hate expressions such as 'senior citizen.' Is everyone else a junior citizen? Old is real. Old is good. I'm old!
ess
PS When it comes to doctors, old is often VERY GOOD. If they were good medicos when they were younger, that won't change. And they've seen a lot, read a lot, learned a lot.
What I want to know is why no one noticed that Candy called her doctor old. "OLD," actually!
I love it! Personally I hate expressions such as 'senior citizen.' Is everyone else a junior citizen? Old is real. Old is good. I'm old!
ess
PS When it comes to doctors, old is often VERY GOOD. If they were good medicos when they were younger, that won't change. And they've seen a lot, read a lot, learned a lot.
Yes Sarah, that's exactly why I said I'm sure that Candy meant no harm by it, is a kind person, and didn't mean to offend. I thought that was pretty clear in my comments.
I don't think Candy meant anything derogative or "labeling" about her comment. She, like all of us, probably has some cognitive fog moments and/or looked over it, felt in her wonderful brain, that it said what she wanted and kept going. Let's give her the benefit of the doubt. I've ready many of her posts and don't see her as someone who would do this to be mean.
going back under my rock
Sarah still exhausted from surgery!
going back under my rock
Sarah still exhausted from surgery!
Hi Candy - Sorry to hear that your news was not better.
When I was first dx'd 18 months ago I was told I had SPMS. Like all flavors of MS SPMS is unique to each person. My doc thought that I was beyond the reach of the first line meds, Copaxone, Rebif, Avonex and Betaseron. He suggested Tysabri. I took him up on his suggestion and my MS has been stable ever since.
I don't know how active/progressive you MS is. I too am curious as to why your doc jumped over Tysabri.
One last thought, I too was startled by your description of your doc. I've never seen anything similar here, which is one of the reasons I keep coming back.
Kyle
When I was first dx'd 18 months ago I was told I had SPMS. Like all flavors of MS SPMS is unique to each person. My doc thought that I was beyond the reach of the first line meds, Copaxone, Rebif, Avonex and Betaseron. He suggested Tysabri. I took him up on his suggestion and my MS has been stable ever since.
I don't know how active/progressive you MS is. I too am curious as to why your doc jumped over Tysabri.
One last thought, I too was startled by your description of your doc. I've never seen anything similar here, which is one of the reasons I keep coming back.
Kyle
Hi CandyGirl,
I'm glad you'll wait to look at the literature. It's getting harder and harder to find solid sources, and easier to get scared to death about what is readily available on run of the mill websites.
Unlike traditional disease modifiers for MS, chemo meds for MS suppress the immune system vs modulating the immune system so there are those risks. However, there are risks without meds too.
Hang in there lady - will pull some info for you.
You've got our shoulders anytime :)
-shell
I'm glad you'll wait to look at the literature. It's getting harder and harder to find solid sources, and easier to get scared to death about what is readily available on run of the mill websites.
Unlike traditional disease modifiers for MS, chemo meds for MS suppress the immune system vs modulating the immune system so there are those risks. However, there are risks without meds too.
Hang in there lady - will pull some info for you.
You've got our shoulders anytime :)
-shell
There are several people at the clinic where I go for my tysabri who are getting rituximab for their MS. It's a potent drug but shown to be effective for some people. I am curious, also, why he decided to skip tysabri and use a bigger gun. Best, Laura
I've heard of Alemtuzumab (Campath) being used off-label for MS patients as well, though it was withdrawn from the market last year apparently in the run-up to having it approved and labelled directly for use with certain autoimmune diseases.
I'm interested to know why he thought Tysabri was a no-go for you. Obviously I'm not after details if this involves personal medical history, but if it was a more generalised reasoning I'd be intrigued to know. Usually there's an attempt to try most or all approved treatments before going a more experimental route.
I know being loaded down with the pharmaceutical literature can be *so* overwhelming! Try and give yourself a little breathing space and the time to make the best decision for yourself. All the best with whatever you choose!
I'm interested to know why he thought Tysabri was a no-go for you. Obviously I'm not after details if this involves personal medical history, but if it was a more generalised reasoning I'd be intrigued to know. Usually there's an attempt to try most or all approved treatments before going a more experimental route.
I know being loaded down with the pharmaceutical literature can be *so* overwhelming! Try and give yourself a little breathing space and the time to make the best decision for yourself. All the best with whatever you choose!
Hi Candy,
I'm sorry to hear it was not better news that you received. I think giving yourself a day to let it soak in before reading the literature you were given is a good idea.
There are a few chemo drugs sometimes used to treat more aggressive MS. It would be helpful if you could provide the name so those with experience with it can help you. The only one I'm familiar with, though never took), is Novantrone (mitoxatrone). Initially my neuro suggested it might be appropriate when I had to stop Rebif. I kind of freaked out a little and saw a neuro at Brigham & Women's Hospital in Boston for a second opinion, he said in his opinion it's more of a last or a later resort because of its toxicity to the heart. Discussed with my reg neuro, he sort of did an about face and said to continue with Copaxone and see how I do on it, and I'm quite stable on it, so never was imminently faced with the decision to try Novantrone.
From what I read, it is given in lower doses than when treating cancer, so most patients don't lost their hair, but it can happen. Also, nausea was pretty low on it for the same reason. With this drug, my biggest concern is the damage it can do to your heart. I would consider it carefully and discuss all questions and concerns with your neuro if this is the treatment he is recommending.
As an aside, and I'm sure you meant no harm by saying it, but the term "chinaman" to describe a Chinese individual is considered by many to be a pejorative term and is offensive. And really, it's not relevant to mention his race. To look at it another way, if he was Caucasian, would you describe him as such? I don't mean to offend you or hurt your feelings but I felt I should say it here instead of in a private message so that it doesn't appear that in our forum, we condone language that is generally understood to be offensive. But like I said, knowing how kind you are, I understand that you didn't mean to offend.
I'm sorry to hear it was not better news that you received. I think giving yourself a day to let it soak in before reading the literature you were given is a good idea.
There are a few chemo drugs sometimes used to treat more aggressive MS. It would be helpful if you could provide the name so those with experience with it can help you. The only one I'm familiar with, though never took), is Novantrone (mitoxatrone). Initially my neuro suggested it might be appropriate when I had to stop Rebif. I kind of freaked out a little and saw a neuro at Brigham & Women's Hospital in Boston for a second opinion, he said in his opinion it's more of a last or a later resort because of its toxicity to the heart. Discussed with my reg neuro, he sort of did an about face and said to continue with Copaxone and see how I do on it, and I'm quite stable on it, so never was imminently faced with the decision to try Novantrone.
From what I read, it is given in lower doses than when treating cancer, so most patients don't lost their hair, but it can happen. Also, nausea was pretty low on it for the same reason. With this drug, my biggest concern is the damage it can do to your heart. I would consider it carefully and discuss all questions and concerns with your neuro if this is the treatment he is recommending.
As an aside, and I'm sure you meant no harm by saying it, but the term "chinaman" to describe a Chinese individual is considered by many to be a pejorative term and is offensive. And really, it's not relevant to mention his race. To look at it another way, if he was Caucasian, would you describe him as such? I don't mean to offend you or hurt your feelings but I felt I should say it here instead of in a private message so that it doesn't appear that in our forum, we condone language that is generally understood to be offensive. But like I said, knowing how kind you are, I understand that you didn't mean to offend.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
