Aa
DMD"S or not ?
Hi guys, sorry for my last post, it kinda got mixed up, kinda like me ....LOL
Anyways, the steroids have done their thing I guess, I have slept for 2 days, and still in my jammies, and extrememly tired, and flushed, with freezing cold hands and feet. So, I don't know what that means,
I have had 2 relaspses in the last 6 months, and one before that they did not want to do the steroid thing..... so, my question is.................... do I ask for DMD's, or not? What is your feedback on it. ?
They have not wanted dto do it before, because they said I was stable.... NOT !!!! and they just don't read their stuff.
I am still waiting to hear from my neuro..... ( probably wait till hell freezes over), and got a appt. with my GP on Thurs. But, I think that is because of the lumps on the back of my knees, we will find out. He was supposed to cal me after my hospital visit, but of course did not. ..............
Enough ranting......... just really wanted dto clear my chest...LOL
Hope you are having a good day,
*HUGS* to all, and thanks for your support,
Candy
Anyways, the steroids have done their thing I guess, I have slept for 2 days, and still in my jammies, and extrememly tired, and flushed, with freezing cold hands and feet. So, I don't know what that means,
I have had 2 relaspses in the last 6 months, and one before that they did not want to do the steroid thing..... so, my question is.................... do I ask for DMD's, or not? What is your feedback on it. ?
They have not wanted dto do it before, because they said I was stable.... NOT !!!! and they just don't read their stuff.
I am still waiting to hear from my neuro..... ( probably wait till hell freezes over), and got a appt. with my GP on Thurs. But, I think that is because of the lumps on the back of my knees, we will find out. He was supposed to cal me after my hospital visit, but of course did not. ..............
Enough ranting......... just really wanted dto clear my chest...LOL
Hope you are having a good day,
*HUGS* to all, and thanks for your support,
Candy
thank you all for your input., I will re-discuss this with my GP and get another referral to my neuro who saw me in Deceber, and said she would see me again in 2 years, unless a referral was needed.
As far as the lumps on my knees, we will find outtomorrow what they are. I started to have 2 lumps, ( like peas) on the inside of the back of my knee, then it started to spread and swell a bit, and now there are lumps on the tendons and things too, and now starting the very same way on my right knee too..... to, we will see ...
Will keep you posted,
Candy
As far as the lumps on my knees, we will find outtomorrow what they are. I started to have 2 lumps, ( like peas) on the inside of the back of my knee, then it started to spread and swell a bit, and now there are lumps on the tendons and things too, and now starting the very same way on my right knee too..... to, we will see ...
Will keep you posted,
Candy
Being 'stable' is exactly when one of the first line CRAB drugs SHOULD be initiated. They are intended to slow down possible future damage. When RRMS hits the 'worsening' stage is when the bigger guns are pulled out: Tysabri, Novantrone, etc.
Like everyone else I fail to see your neuro's logic.
Here is some info I pulled from the MS Soceity of Canada's website. It is a consensus statement regarding the use of DMDs in Canada. I understand it is under review in light of the newer therapies which have been approved, as this was first written many years ago.
I suggest you see your neuro and be prepared to be assertive in that conversation. Bring someone with you if you think it will help to have support. The fact that you are currently relapsing would suggest your MS is not stable; in fact had you already been on a DMD, perhaps this one could have been avoided. I would point that out to her. If she is resistant, I would request a referral for a second opinion, to another clinic, perhaps at UBC if this is feasible for you.
Consensus Statement urges early treatment and wider access for MS drugs
Early treatment of multiple sclerosis (MS) is important and access to proven therapies should not be restricted by where a person with MS happens to live, urge the Canadian MS Clinics Network and the Multiple Sclerosis Society of Canada.
"There is increasing evidence that damage to nerve fibres occurs early in MS, and it is important that all people with active disease be treated as early as possible regardless of their ability to pay or where they happen to live," said Dr. Joël Oger, neurologist at the University of British Columbia and one of the co-authors of a consensus statement on the use of MS therapies.
The consensus statement makes a number of recommendations on the use of the four approved MS therapies that modify the course of this frequently disabling disease of the central nervous system. The statement is in the November 1999 issue of The Canadian Journal of Neurological Sciences.
The consensus statement also insists that access to treatment should not be determined by the criteria used for entry into clinical trials.
Currently a number of provincial drug programs require that the person be totally ambulatory (not even using a cane), have a minimum number of MS attacks and between 18 and 55 years old. The consensus statement rejects these restrictions, arguing that they were meant for use during clinical trials and not intended for ongoing treatment usage.
New information about how MS causes damage within the central nervous system is making treatment more important. While multiple sclerosis is known as a disease that attacks and destroys the protective myelin covering of the central nervous system, in the past two years researchers have found that nerve fibres themselves are damaged and the size of the brain may shrink early in the disease.
"While we already knew these treatments reduce the frequency and severity of relapses and slowed progression of disability, this new information tells us that MS may cause damage in the central nervous system before a person has significant visible disability," said Dr. William J. McIlroy, Multiple Sclerosis Society of Canada national medical advisor.
"Also important is recent evidence that treatment with existing therapies can slow brain atrophy," Dr. McIlroy added.
The consensus statement was signed by 24 members of the Canadian MS Clinics Network and the Multiple Sclerosis Society of Canada to guide the prescribing and reimbursement of the four federally approved MS therapies for relapsing-remitting MS: Avonex, Betaseron, Copaxone and Rebif.
One of the drugs, Betaseron, has recently been approved for treating the progressive form of MS that often develops from relapsing-remitting MS.
"The consensus statement covers the use of an approved therapy for secondary-progressive MS, especially if a patient is still able to walk. However, as MS neurologists, we believe that there are MS patients in this group who fall outside the criteria such as not being ambulatory, but who would benefit from treatment and should be reimbursed," said Dr. Mark Freedman, neurologist at Ottawa General Hospital and the other consensus statement co-author.
The Multiple Sclerosis Society of Canada will be using the consensus statement to urge physicians to offer treatment to all people with MS who could benefit from treatment and to ask provincial governments and third party payers to expand their criteria for drug cost reimbursement.
Multiple sclerosis is a disease that randomly attacks the central nervous system, affecting the control a person has over the body. Symptoms may range from numbness to blindness to paralysis. Canada is known to be a high risk area for MS.
The Multiple Sclerosis Society of Canada is the foremost voluntary agency which provides hope and help to the estimated 50,000 Canadians with MS and their families through extensive MS research and services programs.
The Canadian MS Clinics Network is a non-profit organization of university hospital-based MS clinics which have specialized expertise in the diagnosis and management of MS.
Like everyone else I fail to see your neuro's logic.
Here is some info I pulled from the MS Soceity of Canada's website. It is a consensus statement regarding the use of DMDs in Canada. I understand it is under review in light of the newer therapies which have been approved, as this was first written many years ago.
I suggest you see your neuro and be prepared to be assertive in that conversation. Bring someone with you if you think it will help to have support. The fact that you are currently relapsing would suggest your MS is not stable; in fact had you already been on a DMD, perhaps this one could have been avoided. I would point that out to her. If she is resistant, I would request a referral for a second opinion, to another clinic, perhaps at UBC if this is feasible for you.
Consensus Statement urges early treatment and wider access for MS drugs
Early treatment of multiple sclerosis (MS) is important and access to proven therapies should not be restricted by where a person with MS happens to live, urge the Canadian MS Clinics Network and the Multiple Sclerosis Society of Canada.
"There is increasing evidence that damage to nerve fibres occurs early in MS, and it is important that all people with active disease be treated as early as possible regardless of their ability to pay or where they happen to live," said Dr. Joël Oger, neurologist at the University of British Columbia and one of the co-authors of a consensus statement on the use of MS therapies.
The consensus statement makes a number of recommendations on the use of the four approved MS therapies that modify the course of this frequently disabling disease of the central nervous system. The statement is in the November 1999 issue of The Canadian Journal of Neurological Sciences.
The consensus statement also insists that access to treatment should not be determined by the criteria used for entry into clinical trials.
Currently a number of provincial drug programs require that the person be totally ambulatory (not even using a cane), have a minimum number of MS attacks and between 18 and 55 years old. The consensus statement rejects these restrictions, arguing that they were meant for use during clinical trials and not intended for ongoing treatment usage.
New information about how MS causes damage within the central nervous system is making treatment more important. While multiple sclerosis is known as a disease that attacks and destroys the protective myelin covering of the central nervous system, in the past two years researchers have found that nerve fibres themselves are damaged and the size of the brain may shrink early in the disease.
"While we already knew these treatments reduce the frequency and severity of relapses and slowed progression of disability, this new information tells us that MS may cause damage in the central nervous system before a person has significant visible disability," said Dr. William J. McIlroy, Multiple Sclerosis Society of Canada national medical advisor.
"Also important is recent evidence that treatment with existing therapies can slow brain atrophy," Dr. McIlroy added.
The consensus statement was signed by 24 members of the Canadian MS Clinics Network and the Multiple Sclerosis Society of Canada to guide the prescribing and reimbursement of the four federally approved MS therapies for relapsing-remitting MS: Avonex, Betaseron, Copaxone and Rebif.
One of the drugs, Betaseron, has recently been approved for treating the progressive form of MS that often develops from relapsing-remitting MS.
"The consensus statement covers the use of an approved therapy for secondary-progressive MS, especially if a patient is still able to walk. However, as MS neurologists, we believe that there are MS patients in this group who fall outside the criteria such as not being ambulatory, but who would benefit from treatment and should be reimbursed," said Dr. Mark Freedman, neurologist at Ottawa General Hospital and the other consensus statement co-author.
The Multiple Sclerosis Society of Canada will be using the consensus statement to urge physicians to offer treatment to all people with MS who could benefit from treatment and to ask provincial governments and third party payers to expand their criteria for drug cost reimbursement.
Multiple sclerosis is a disease that randomly attacks the central nervous system, affecting the control a person has over the body. Symptoms may range from numbness to blindness to paralysis. Canada is known to be a high risk area for MS.
The Multiple Sclerosis Society of Canada is the foremost voluntary agency which provides hope and help to the estimated 50,000 Canadians with MS and their families through extensive MS research and services programs.
The Canadian MS Clinics Network is a non-profit organization of university hospital-based MS clinics which have specialized expertise in the diagnosis and management of MS.
I would agree about seeing another neuro, second opinion, and the DMD's.
Wishing you the best,
Norm
Wishing you the best,
Norm
I'd push for a DMD Candy. Stability isn't a disqualifier! Even if the doc believes it is, you are no longer stable so it doesn't apply anymore. (Please understand, I mean your MS status isn't stable!)
I sure hope the steroids did more than give you side effects. It could be too soon to see bunches of improvement though. Not all of us have immediate relief, especially if the flare doesn't involve a big inflammatory process.
So what are the lumps? Do you have Baker's cysts?
Good luck getting through to your docs.
Mary
I sure hope the steroids did more than give you side effects. It could be too soon to see bunches of improvement though. Not all of us have immediate relief, especially if the flare doesn't involve a big inflammatory process.
So what are the lumps? Do you have Baker's cysts?
Good luck getting through to your docs.
Mary
You really should be on a DMD. I was in limbo for so many years so I went a long time without a DMD.I was finally dx with RRMS and began taking Copaxone. I really wish that I had started earlier before all this nerve damage. I think you should definitely get a second opinion from another Neuro.
Good luck,
Deb
Good luck,
Deb
Demand a DMD!! Cannot believe how dumb some in the medical community are sometimes. I mean really, no DMD b/c you are stable? Yikes.
Might want to think about looking for new neuro. I know that is much easier said than done but you should have confidence in your neuro. Confidence that he/she knows what they are doing, are on your side and will do you know harm. By not getting you on dmd, he/she is potentially doing you harm.
Julie
Might want to think about looking for new neuro. I know that is much easier said than done but you should have confidence in your neuro. Confidence that he/she knows what they are doing, are on your side and will do you know harm. By not getting you on dmd, he/she is potentially doing you harm.
Julie
Good Question. This is a complicated question for each of us and each of us has to know what the facts are and make a decision. There is no right or wrong answer because it is complicated.
There are two things happening in MS inflammation and nerve damage. Steroids help to calm down symptoms from inflammation. When symptoms are caused by inflammation they come and go with inflammation. DMDs slow down progression of nerve damage which can't be seen until the damage is done. The DMDs work best in the beginning of the disease before it hits the Progressive forms.
There are many more people since the DMDs came out who remain mobile and have a better quality of life over all.
It comes down to a personal choice. I have a Progressive form of MS and I asked myself if I could live with my decision years from now if I am in a wheelchair from my MS. There are no guarantees with a DMD but with out one it is like going down hill with no brakes. I chose not to be on one because I have had the disease so long and the DMDs do not work well with PPMS. I looked at all the pros and cons in my case.
Alex
There are two things happening in MS inflammation and nerve damage. Steroids help to calm down symptoms from inflammation. When symptoms are caused by inflammation they come and go with inflammation. DMDs slow down progression of nerve damage which can't be seen until the damage is done. The DMDs work best in the beginning of the disease before it hits the Progressive forms.
There are many more people since the DMDs came out who remain mobile and have a better quality of life over all.
It comes down to a personal choice. I have a Progressive form of MS and I asked myself if I could live with my decision years from now if I am in a wheelchair from my MS. There are no guarantees with a DMD but with out one it is like going down hill with no brakes. I chose not to be on one because I have had the disease so long and the DMDs do not work well with PPMS. I looked at all the pros and cons in my case.
Alex
Jensequitur is absolutely on the mark - this is dumb, dumb, dumb. You obviously are not stable if you have had two relapses in six months. Perhaps you need to find another neurol to take a fresh look at your treatment?
Sounds like you're feeling better!
Choosing not to give you DMDs because you're stable is just dumb, in my opinion. All the research shows that they slow down the MS disease process, even without relapses.
Choosing not to give you DMDs because you're stable is just dumb, in my opinion. All the research shows that they slow down the MS disease process, even without relapses.
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