Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 New member.. > > Hi...I apologize if I am writing something I should not here. If so, > please let me know. > > > > My 32 year old daughter has ms, for the past 3 years. She developed > antibodies to Avonex, and Copaxone has not helped. she is trying the Swank > Diet at this time. Her mri today showed a new plum-sized lesion on her > brain. Her ms specialists are really encouraging her to use Tysabri. She > is terrified of that. > > > > Has anyone been down this road? Any thoughts or information would be so > appreciated. If I should go to a different group regarding this, perhaps > you could refer me elsewhere? We are worried and discouraged. > > > > Thanks, > > > > Cheryle, in Oregon > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Hi, as for the medicine way, you may try FriendsWithMs group. But the best bet diet along with the other things reccommended here may well help also. As for myself, I combine Avonex, Best Bet Diet, avoiding food I am allergic to, lots of sleep and relaxation, avoiding stress, working 3/4time, consider the psychosomatic correlations, and generally walking the spiritual way of things. Holistic approach is needed. Works perfectly. Regards, > > > > > Hi...I apologize if I am writing something I should not here. If so, > > please let me know. > > > > > > > > My 32 year old daughter has ms, for the past 3 years. She developed > > antibodies to Avonex, and Copaxone has not helped. she is trying the Swank > > Diet at this time. Her mri today showed a new plum-sized lesion on her > > brain. Her ms specialists are really encouraging her to use Tysabri. She > > is terrified of that. > > > > > > > > Has anyone been down this road? Any thoughts or information would be so > > appreciated. If I should go to a different group regarding this, perhaps > > you could refer me elsewhere? We are worried and discouraged. > > > > > > > > Thanks, > > > > > > > > Cheryle, in Oregon > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Hi I'm not on any meds. I was on Avonex but the stress (I'm a needlephobe) and the scar tissue it was forming (my cat can no longer sit on my lap) was a bit much pain for v little results (my neuro also feels it didn't work for me anyway). I have been on the Best Bet Diet (easy to understand info at www.msrc.co.uk) and have been taking the recommended supplements on the site too. The most helpful of that for me has been ensuring my Vit D level has stayed at 9000IU per day. I don't drink at all (killer for 'acquaintance relationships' which I've found a great thing!!), I try my hardest to stay free of negative people and situations to limit 'negative' stress (remember that excitement can be a 'positive' stress for some), and try to stay as active as I can. My neurologist and I don't count or look too intently at my lesions (I think he gets the fact that it wouldn't help me to be constantly under the weight of counting lesions) - I leave it up to him. We discussed Tysabri but I am sure that were I to go on it, I'd be the one in a million who'd suffer the worst effects (I usually react to every med in the worst way) and my neuro has agreed that it wouldn't be the right choice for me. ThisIsMS is a great site to find out more info. Facebook has some great MS-focused groups she could look into too. I think she really needs to look into ALL her options for support, medical needs, 'alternative' therapies etc etc I truly hope this helps Remember, we're ALL always here to help - please let her know that too. 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) > > > > > Hi...I apologize if I am writing something I should not here. If so, > > please let me know. > > > > > > > > My 32 year old daughter has ms, for the past 3 years. She developed > > antibodies to Avonex, and Copaxone has not helped. she is trying the Swank > > Diet at this time. Her mri today showed a new plum-sized lesion on her > > brain. Her ms specialists are really encouraging her to use Tysabri. She > > is terrified of that. > > > > > > > > Has anyone been down this road? Any thoughts or information would be so > > appreciated. If I should go to a different group regarding this, perhaps > > you could refer me elsewhere? We are worried and discouraged. > > > > > > > > Thanks, > > > > > > > > Cheryle, in Oregon > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 My 32 year old daughter has ms, for the past 3 years. She developed > antibodies to Avonex, and Copaxone has not helped. she is trying the Swank > Diet at this time. Her mri today showed a new plum-sized lesion on her > brain. Her ms specialists are really encouraging her to use Tysabri. She > is terrified of that. Cheryle, We do not do drugs on this site, but I'm of an age where I can remember the Tysabri trials. Which had to be stopped because MSers were dying of PML (Progressive Multifocal Leukoencephalopathy). Biogen fought the ruling and the present figures show that 28 MSers have now got or died from the dreaded leathal desease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2010 Report Share Posted June 13, 2010 Hi, This is my first post, I think. I do want to say that I can understand how uncomfortable it is to run out of meds. I have two of the pill jockeys, one for regular meds and the other just for my pain medicines, it works for me. As for doctors not refilling a prescription early, my doc has a huge sign in his office waiting room with his guidelines for refilling meds, no early meds for any reason, if pain is that severe, go to the ER, he only refills every 28 days. I manage to stretch out my hydrocodone and Soma, because I am also on a high daily dosage of Neurontin for the nerve pain. I have severe diabetic neuropathy as well as a back condition. It often angers me to find out about the abuse or selling of meds gotten from docs by pretense when it only hurts those of who deal daily and nightly with chronic pain. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2010 Report Share Posted June 18, 2010 Diane Sullivan wrote: > It often angers me to find out about the abuse or selling of meds gotten from docs by pretense when it only hurts those of who deal daily and nightly with chronic pain. Diane, I agree completely with you about abuse that others do. I never can tell what the pain can be and I agree you have to stretch it out. I had another Doctor who gave me a low prescription of break thru so I could have a back up and he gave me Actiq lollipops but those were strange and I just tough it out. My Doctor, who is very compassionate, had to put a notice if patients called after hours for medication, they will be charged 150.00 and if they contact her for something she could do during office hours, she charges. She was just getting overwhelmed with calls as she is so compassionate but has to control the patients. She sticks to you have to go to the ER if it is so bad to contact after hours for medication. She is very respectful about it so I appreciate guidelines being posted. Good points you made. Bennie Quote Link to comment Share on other sites More sharing options...
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