Starting LDN - what do you do?
Hi
Aylish I will try what you said about Smiths. I have also talked to Harry Z and he put me onto a doc in Richmond Hill which i have to follow up on, he was on holidays when i called. Thanks for your explanation of CMT, i didn't see your other posts about it. Joyce i did not get your e-mail about the doc in Markham , i live about 1 hour from there and will try him for sure. If you could let me know that would be great. Rob
Hi Rob...you've got mail...
Check out your private messages. I think that may be where I sent you something before...damned memory sucks...lol. Joyce.
Hi
Ten days in and I'm not stiff anymore so I'm thinking it was due to the LDN and not the exercise. It lasted for five days or so. And I'm not waking up early and that only happened twice I think. Other than that not much to report, no differences or changes. My mood may be a bit lighter. I'm going to stay on the 3mg for the complete month prescription and then go to 4.5mg. I go to the clinic/specialist next week (my second visit).
Rob, have you found a doctor to prescribe yet?
Aylish
Ten days in and I'm not stiff anymore so I'm thinking it was due to the LDN and not the exercise. It lasted for five days or so. And I'm not waking up early and that only happened twice I think. Other than that not much to report, no differences or changes. My mood may be a bit lighter. I'm going to stay on the 3mg for the complete month prescription and then go to 4.5mg. I go to the clinic/specialist next week (my second visit).
Rob, have you found a doctor to prescribe yet?
Aylish
Hi aylish
I have got an appointment with another doctor on the 18 of March and will talk it over with him . I got his name from Joyce, so will see what happens. I will let you know. Always looking for your posts so keep me updated. Rob
I had an appointment at the MS clinic today (second time I've been there). I had an MRI in December (and one previous in July). I had two lesions on the brain in July. Those two are gone but there are two new ones. Nothing on the spine. I don't know...I guess breaking even is better than getting more spots (although the doctor tells me it really has nothing to do with the number). Frankly the whole thing just pisses me off. I HATE all of this. I told the neuro I was taking LDN. He was ok and thought my plan to have another MRI in 6 months was a good way to measure effects and determine if LDN was the way to go. He was disappointed about Tysabri being pulled but is optimistic it will be back when all is evaluated, he's guessing maybe a year before Health Canada approves it (suggests it may be reintroduced as a solitary treatment vs. in combination with Avonex or something of the like).
Nothing new to report with the LDN. I go back to my GP next week and will get a prescription for 4.5mg. and will see what happens at that dosage.
I'm always a little tense and kinda curt with everyone at the clinic. I figured I just didn't like the people. And of course it's not the people I dislike at all, it's the MS.
Nothing new to report with the LDN. I go back to my GP next week and will get a prescription for 4.5mg. and will see what happens at that dosage.
I'm always a little tense and kinda curt with everyone at the clinic. I figured I just didn't like the people. And of course it's not the people I dislike at all, it's the MS.
Hi Aylish
I can toatly understand your frustration, I seem to be getting worse every day and there is nothing i can do about it. When i ask for help i am told thats not approved. Give me a break! I feel like i have been put out to pasture. It seems like the only drugs that doctors are interested in are the ones that pay for the perks that they get to prescribe it to us. WOW talk about pissed off. Good reading your posts Rob
What do you mean when you say you are getting worse every day? What's happening? How long have you had MS, when were you diagnosed? I don't know about you but I love to hear about people who were diagnosed and then didn't have trouble for years. I feel panicked when I read about people that were diagnosed and within months or a year they are quite disabled. I really hate MS. I read a post earlier and the guy was pretty down and saying what's so bad about giving up when things get really bad and people responded with good thoughts and wishes and really meant it, that every day is a gift. But I just don't feel that way. A gift, yeah like socks at Christmas. *lol* I was surprised at the reaction I had to this guy's post but I just thought, yeah, I know what you mean and I think I would be of a mind to take my own life should the MS ever get to the point where I can't be independant. It's not my idea of living, that's not the way I choose to "live"....anyway, clearly I'm down in the dumps and maybe one day I'll feel differently (maybe tomorrow)...but I hate, hate, HATE the thought of being crippled and disabled and not clear minded or any one of a million debilitating ways this thing could go...
Robbie, you are in Canada, right? Have you checked into doing a phone consult in the states and getting your LDN sent in from there? I know that a couple of patients were doing that with Dr. Scott and getting their LDN shipped from Skip's and there were no problems with customs, but Dr. Scott is no longer doing phone consults so I guess that could very well be the reason! Why don't you just order the Revia from Medsmex and mix it yourself? You don't need a script this way and you really sound like you could use some do it yourself help right now.
Unfortunately, you may also be having some problems with depression on top of the every day struggles with MS. Is this something you think is becoming a problem for you? If so, there are several newer antidepressants out there that can work miracles, Effexor and Celexa are both excellent. This is something you should discuss with your doctor. You will be amazed at how much this can help your mental well being.
Aylish, my son was becoming pretty progressive prior to starting LDN. He was initially classified as RRMS and the neuro was preparing to start him on Novantrone and switch him to PPMS when we fired him and started LDN. He was having major attacks including total paralysis, and he was so depressed from the Rebif that we were afraid to leave him alone for one minute. It's hard enough just being 16. But, he certainly has done better with the LDN, even though he still has problems now and then, and I do not believe it halts progression as I was originally told. I do, however, believe that it helps in alot of ways, and he will continue to take it.
There are new medications on the pipeline for MS, so we have to be hopeful. One is an oral pill called Mylanix that can be taken daily. It works by interfering with the white blood cells that are linked to the spread of MS. I believe it is in Phase III of the trials now. Another is Alferon N, which gives alot of hope to those who have developed antibodies to the other interferons and are unable to use them anymore. This is in Phase II of the testing. Canada is doing a very promising study on MBP8298, an i.v. drug administered once every 6 months, thought to be very helpful to SPMS. This is the first drug to my knowledge developed for SPMS, so lets just keep our fingers crossed and see how this goes.
Have a good weekend!
Kim
Unfortunately, you may also be having some problems with depression on top of the every day struggles with MS. Is this something you think is becoming a problem for you? If so, there are several newer antidepressants out there that can work miracles, Effexor and Celexa are both excellent. This is something you should discuss with your doctor. You will be amazed at how much this can help your mental well being.
Aylish, my son was becoming pretty progressive prior to starting LDN. He was initially classified as RRMS and the neuro was preparing to start him on Novantrone and switch him to PPMS when we fired him and started LDN. He was having major attacks including total paralysis, and he was so depressed from the Rebif that we were afraid to leave him alone for one minute. It's hard enough just being 16. But, he certainly has done better with the LDN, even though he still has problems now and then, and I do not believe it halts progression as I was originally told. I do, however, believe that it helps in alot of ways, and he will continue to take it.
There are new medications on the pipeline for MS, so we have to be hopeful. One is an oral pill called Mylanix that can be taken daily. It works by interfering with the white blood cells that are linked to the spread of MS. I believe it is in Phase III of the trials now. Another is Alferon N, which gives alot of hope to those who have developed antibodies to the other interferons and are unable to use them anymore. This is in Phase II of the testing. Canada is doing a very promising study on MBP8298, an i.v. drug administered once every 6 months, thought to be very helpful to SPMS. This is the first drug to my knowledge developed for SPMS, so lets just keep our fingers crossed and see how this goes.
Have a good weekend!
Kim
Kim R.
Aylish,
This is a good week to rant - particularly given the way the drugs companies have let us down after building up our hopes. I agree with you that one needs to have some limits to how far you allow this disease to take over you. The list of symptoms is unbelievably distressing - each one (incontinence, cognitive problems etc) is a major illness / problem in its own right. This vile disease can bring all of them along. Getting rid of depression doesn't seem to address any of the other problems.
My limits are as follows: to see, to walk, to work. These are of course personal decisions but in my view I've given a lot away all ready. Other's see life as precious regardless of how ill they become - that is their choice.
Being angry is a good thing in my view - it shows that you really liked life before ms.
I wish all those on LDN well - perhaps once it is properly trialled it might prove to be the best available treatment.
Bromley
This is a good week to rant - particularly given the way the drugs companies have let us down after building up our hopes. I agree with you that one needs to have some limits to how far you allow this disease to take over you. The list of symptoms is unbelievably distressing - each one (incontinence, cognitive problems etc) is a major illness / problem in its own right. This vile disease can bring all of them along. Getting rid of depression doesn't seem to address any of the other problems.
My limits are as follows: to see, to walk, to work. These are of course personal decisions but in my view I've given a lot away all ready. Other's see life as precious regardless of how ill they become - that is their choice.
Being angry is a good thing in my view - it shows that you really liked life before ms.
I wish all those on LDN well - perhaps once it is properly trialled it might prove to be the best available treatment.
Bromley
hi Aylish
I have had MS for 12 years now. The first 5 or 6 were great, hardly knew i had it other than fatigue and pins and needles in my feet. If it wasen't for the ON i probably would have went for years before ever being diagnosed. The last couple of years have been the worst, no real attacks just a steady progression of symptoms.I have bad and good days, the bad gets worse and the good gets worse. I just take it as it comes!. I guess we all have our limits as far as the quality of life goes. I respect everyones decision about this and belive it is a very personal thing.God if we can't make decisions on our own life what do we have left. MS is somthing that can be delt with to a certain point. I guess we all get there sooner or later. Rob
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Chilcotin
- Family Member
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- Joined: Tue Nov 23, 2004 3:00 pm
- Location: British Columbia, Canada
If you want more information on the MBP8298 that Kim mentioned in her post you can go to this wesite.
http://www.biomsmedical.com/index.asp
They are a company based in Edmonton. They are looking for people for the trial.
Erin
http://www.biomsmedical.com/index.asp
They are a company based in Edmonton. They are looking for people for the trial.
Erin