Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Moyra, I too have PP-MS and know there aren't even any options for us -- outside of LDN! I just went from 3.0mg to 4.5mg yesterday (after 2.5 months on 3mg) s o we'll see how that goes. My major symptom is balance/walking instability, and I look back a year (when I was dx'd) and see very little progression. I'm thinking the LDN did the heavy lifting as I feel wonderful these days. I take nothing except vitamins/supplements and LDN. I get to the gym 5 days a week and that seems to make a huge difference as well (I notice it when I skip). You gotta love those endorphins So hang in there, just say " No " to handicapped living and get on LDN. My doctor will prescribe it and does have experience with MS patients using it, so call him to make arrangements if you need that help (it took me a month to find a sympathetic doc).... Dr. Sullivan, outside of burg, Mechanicsburg, PA -- 717-697-5050. He charges $4/minute over the phone. Good luck, phil On Friday, July 11, 2003, at 10:19 AM, moyra.haigh wrote: > Just thought I would share this with you from a letter I received from > my neuro here in the UK: > > " Dr X has had other patients who have raised this issue (LDN) before. > He has found no evidence of it's benefit when he has done a previous > literature search and as such, he cannot recommend this treatment to > patients. Also, we do not have any experience of patients using the > treatment. " > > Looks like I had better just sit here and let my primary progressive > MS get worse then, until I finish up permanently in a wheelchair and > eventually rot away like an old cabbage. (No ABC drugs available here > for PPMS) > > LIKE HELL !!! > > These people don't realise that we are a determined lot. It's called > survival. We will fight this thing as long as we draw breath. > > Keep up the good work. > > God bless. > > Moyra > > > > > > > > > > <image.tiff> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Perhaps ce could help...he's taking LDN in the UK. Joyce. From: " Marie Deady " , " moyra.haigh " Subject: Re: [low dose naltrexone] Neuros and LDN.... Date: Fri, 11 Jul 2003 11:55:08 -0400 Your doctor is looking in the wrong places. He never asked me how I feel. I FEEL GREAT. Tell him that and I have had MS for 26 years. Feeling better than I have in years. Marie ----- Original Message ----- From: moyra.haigh low dose naltrexone Sent: Friday, July 11, 2003 10:19 AM Subject: [low dose naltrexone] Neuros and LDN.... Just thought I would share this with you from a letter I received from my neuro here in the UK: " Dr X has had other patients who have raised this issue (LDN) before. He has found no evidence of it's benefit when he has done a previous literature search and as such, he cannot recommend this treatment to patients. Also, we do not have any experience of patients using the treatment. " Looks like I had better just sit here and let my primary progressive MS get worse then, until I finish up permanently in a wheelchair and eventually rot away like an old cabbage. (No ABC drugs available here for PPMS) LIKE HELL !!! These people don't realise that we are a determined lot. It's called survival. We will fight this thing as long as we draw breath. Keep up the good work. God bless. Moyra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Your doctor is looking in the wrong places. He never asked me how I feel. I FEEL GREAT. Tell him that and I have had MS for 26 years. Feeling better than I have in years. Marie ----- Original Message ----- From: moyra.haigh low dose naltrexone Sent: Friday, July 11, 2003 10:19 AM Subject: [low dose naltrexone] Neuros and LDN.... Just thought I would share this with you from a letter I received from my neuro here in the UK: "Dr X has had other patients who have raised this issue (LDN) before. He has found no evidence of it's benefit when he has done a previous literature search and as such, he cannot recommend this treatment to patients. Also, we do not have any experience of patients using the treatment." Looks like I had better just sit here and let my primary progressive MS get worse then, until I finish up permanently in a wheelchair and eventually rot away like an old cabbage. (No ABC drugs available here for PPMS) LIKE HELL !!! These people don't realise that we are a determined lot. It's called survival. We will fight this thing as long as we draw breath. Keep up the good work. God bless. Moyra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 RIGHT ON!!!!!! Original Message: ----------------- From: moyra.haigh moyra.haigh@... Date: Fri, 11 Jul 2003 15:19:48 +0100 low dose naltrexone Subject: [low dose naltrexone] Neuros and LDN.... Just thought I would share this with you from a letter I received from my neuro here in the UK: " Dr X has had other patients who have raised this issue (LDN) before. He has found no evidence of it's benefit when he has done a previous literature search and as such, he cannot recommend this treatment to patients. Also, we do not have any experience of patients using the treatment. " Looks like I had better just sit here and let my primary progressive MS get worse then, until I finish up permanently in a wheelchair and eventually rot away like an old cabbage. (No ABC drugs available here for PPMS) LIKE HELL !!! These people don't realise that we are a determined lot. It's called survival. We will fight this thing as long as we draw breath. Keep up the good work. God bless. Moyra -------------------------------------------------------------------- mail2web - Check your email from the web at http://mail2web.com/ . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Hi Moyra. Perhaps you could point out that the reason they " do not have any experience of patients using the treatment " is that they won't prescribe it, and to use that as a reason to not prescribe it is " circular absurdity " . You could volunteer to be their first patient " using the treatment " , but it probably won't change their mind. Looks like you may have to do what many of us have done...keep looking for a doctor to prescribe LDN for you or contact Dr. Bihari or Dr. Sullivan in the USA. You have nothing to lose. Keep us posted. God Bless! Sue > Just thought I would share this with you from a letter I received from my neuro here in the UK: > > " Dr X has had other patients who have raised this issue (LDN) before. He has found no evidence of it's benefit when he has done a previous literature search and as such, he cannot recommend this treatment to patients. Also, we do not have any experience of patients using the treatment. " > > Looks like I had better just sit here and let my primary progressive MS get worse then, until I finish up permanently in a wheelchair and eventually rot away like an old cabbage. (No ABC drugs available here for PPMS) > > LIKE HELL !!! > > These people don't realise that we are a determined lot. It's called survival. We will fight this thing as long as we draw breath. > > Keep up the good work. > > God bless. > > Moyra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 " YOU GO GIRL " MY PRAYERS AND GOOD WISHES FOR YOU.....HUGS, SALLY > Just thought I would share this with you from a letter I received from my neuro here in the UK: > > " Dr X has had other patients who have raised this issue (LDN) before. He has found no evidence of it's benefit when he has done a previous literature search and as such, he cannot recommend this treatment to patients. Also, we do not have any experience of patients using the treatment. " > > Looks like I had better just sit here and let my primary progressive MS get worse then, until I finish up permanently in a wheelchair and eventually rot away like an old cabbage. (No ABC drugs available here for PPMS) > > LIKE HELL !!! > > These people don't realise that we are a determined lot. It's called survival. We will fight this thing as long as we draw breath. > > Keep up the good work. > > God bless. > > Moyra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 As many others have said, that is so often the reaction. My (private) neurologist in London prescribed LDN for me, although I don't think he's convinced it's any good yet. Still he's one of the few with an open enough mind to at least give it a try. Hopefully in time he'll see how well it's working for me. I am sure there are quite a few of us here in the UK now on LDN. Feel free to private mail me if you need some help getting hold of it. Matt. -----Original Message-----From: moyra.haigh [mailto:moyra.haigh@...] Sent: 11 July 2003 15:20low dose naltrexone Subject: [low dose naltrexone] Neuros and LDN.... Just thought I would share this with you from a letter I received from my neuro here in the UK: "Dr X has had other patients who have raised this issue (LDN) before. He has found no evidence of it's benefit when he has done a previous literature search and as such, he cannot recommend this treatment to patients. Also, we do not have any experience of patients using the treatment." Looks like I had better just sit here and let my primary progressive MS get worse then, until I finish up permanently in a wheelchair and eventually rot away like an old cabbage. (No ABC drugs available here for PPMS) LIKE HELL !!! These people don't realise that we are a determined lot. It's called survival. We will fight this thing as long as we draw breath. Keep up the good work. God bless. Moyra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 See now this is the thing that really puzzles me. I totally understand a neuro position in this whole thing if they are being sold that bill of goods which states that the only thing that is sanctioned is one of the abcr's but sheesh..if they say they have nothing for it then why not at least give the ldn a try. Joyce. From: " Sally " low dose naltrexone Subject: [low dose naltrexone] Re: Neuros and LDN.... Date: Fri, 11 Jul 2003 18:20:45 -0000 " YOU GO GIRL " MY PRAYERS AND GOOD WISHES FOR YOU.....HUGS, SALLY --- In low dose naltrexone , " moyra.haigh " wrote: >Just thought I would share this with you from a letter I received from my neuro here in the UK: > > " Dr X has had other patients who have raised this issue (LDN) before. He has found no evidence of it's benefit when he has done a previous literature search and as such, he cannot recommend this treatment to patients. Also, we do not have any experience of patients using the treatment. " > >Looks like I had better just sit here and let my primary progressive MS get worse then, until I finish up permanently in a wheelchair and eventually rot away like an old cabbage. (No ABC drugs available here for PPMS) > >LIKE HELL !!! > >These people don't realise that we are a determined lot. It's called survival. We will fight this thing as long as we draw breath. > >Keep up the good work. > >God bless. > >Moyra _________________________________________________________________ Add photos to your messages with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 LDN is the only drug I'm on (I have PPMS) and I feel great. I'm still waiting for my walking to improve but it's only been 2+ months on 3mg (just went to 4.5mg yesterday) so I will be patient (do I have a choice? lol) I did experience insomnia last night after taking my first higher dose of 4.5mg. Anybody else experienced this? I'm not wavering, I will give it another try tonight but I just wondered. I did have a bit of that the first night on 3mg (back in April) but after that, nothing... phil On Fri, 11 Jul 2003, wkendz 32 wrote: > See now this is the thing that really puzzles me. I totally understand a > neuro position in this whole thing if they are being sold that bill of goods > which states that the only thing that is sanctioned is one of the abcr's but > sheesh..if they say they have nothing for it then why not at least give the > ldn a try. Joyce. > > > From: " Sally " > low dose naltrexone > Subject: [low dose naltrexone] Re: Neuros and LDN.... > Date: Fri, 11 Jul 2003 18:20:45 -0000 > " YOU GO GIRL " MY PRAYERS AND GOOD WISHES FOR YOU.....HUGS, SALLY > > >Just thought I would share this with you from a letter I received > from my neuro here in the UK: > > > > " Dr X has had other patients who have raised this issue (LDN) > before. He has found no evidence of it's benefit when he has done a > previous literature search and as such, he cannot recommend this > treatment to patients. Also, we do not have any experience of > patients using the treatment. " > > > >Looks like I had better just sit here and let my primary > progressive MS get worse then, until I finish up permanently in a > wheelchair and eventually rot away like an old cabbage. (No ABC > drugs available here for PPMS) > > > >LIKE HELL !!! > > > >These people don't realise that we are a determined lot. It's > called survival. We will fight this thing as long as we draw > breath. > > > >Keep up the good work. > > > >God bless. > > > >Moyra > > _________________________________________________________________ > Add photos to your messages with MSN 8. Get 2 months FREE*. > http://join.msn.com/?page=features/featuredemail > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Hi Phil, Dr. Bihari said that a lot of people have insomnia for about a week. but if after a week, you still have insomnia then he says that the dose is to high for you. Who says that you have to be on 3mg or 4.5 mg? 4.5mg was too high for me so I went down to 3mg and then I started to gradually go up. I am not at 3mg and not at 4.5. I am somewhere in between.About 3.75 or 4mg. You have to find the mg that is right for you. Remember everyone is different. Wishing you the best. Marie ----- Original Message ----- From: " G. Harding " <philh@...> " wkendz 32 " <wkendz32@...> Cc: <salpal@...>; <low dose naltrexone > Sent: Friday, July 11, 2003 2:52 PM Subject: Re: [low dose naltrexone] Re: Neuros and LDN.... > LDN is the only drug I'm on (I have PPMS) and I feel great. I'm still > waiting for my walking to improve but it's only been 2+ months on 3mg > (just went to 4.5mg yesterday) so I will be patient (do I have a choice? > lol) > I did experience insomnia last night after taking my first higher dose of > 4.5mg. Anybody else experienced this? I'm not wavering, I will give it > another try tonight but I just wondered. I did have a bit of that the > first night on 3mg (back in April) but after that, nothing... > phil > > > On Fri, 11 Jul 2003, wkendz 32 wrote: > > > See now this is the thing that really puzzles me. I totally understand a > > neuro position in this whole thing if they are being sold that bill of goods > > which states that the only thing that is sanctioned is one of the abcr's but > > sheesh..if they say they have nothing for it then why not at least give the > > ldn a try. Joyce. > > > > > > From: " Sally " > > low dose naltrexone > > Subject: [low dose naltrexone] Re: Neuros and LDN.... > > Date: Fri, 11 Jul 2003 18:20:45 -0000 > > " YOU GO GIRL " MY PRAYERS AND GOOD WISHES FOR YOU.....HUGS, SALLY > > > > >Just thought I would share this with you from a letter I received > > from my neuro here in the UK: > > > > > > " Dr X has had other patients who have raised this issue (LDN) > > before. He has found no evidence of it's benefit when he has done a > > previous literature search and as such, he cannot recommend this > > treatment to patients. Also, we do not have any experience of > > patients using the treatment. " > > > > > >Looks like I had better just sit here and let my primary > > progressive MS get worse then, until I finish up permanently in a > > wheelchair and eventually rot away like an old cabbage. (No ABC > > drugs available here for PPMS) > > > > > >LIKE HELL !!! > > > > > >These people don't realise that we are a determined lot. It's > > called survival. We will fight this thing as long as we draw > > breath. > > > > > >Keep up the good work. > > > > > >God bless. > > > > > >Moyra > > > > _________________________________________________________________ > > Add photos to your messages with MSN 8. Get 2 months FREE*. > > http://join.msn.com/?page=features/featuredemail > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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