This Is MS Multiple Sclerosis Community: Knowledge & Support

Thanks Tracey.
One shot of Copaxone had me back in the ER, with anaphalactic (sp?) shock. I stopped breathing and the nurse who was with me called 911.....

Im allergic to it, obviously, there wont be another shot of C for me!

I appreciate your advice, but I wont be sticking myself with any more needles- ever again.

Best to you...
MSn

MSnik,
I am so sorry to hear about your reaction. We are all so different in our symptoms and experiences with MS. I guess we all need to be cautious in "sharing our wisdom" or drawing conclusions from the anecdotal experience of others. It sounds like you were very lucky to have a nurse with you to help you deal with your unexpected reaction. Hopefully this experience will take you and your doctor one step closer to identifying the best protocol for you to follow.

Best regards...

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Why is this on the LDN page? I think this belongs on the copaxone page.

I believe it is actually on the correct page. My original post was about developing new lesions while on LDN. Somewhere along the way, someone suggested I add Copaxone to my LDN regimen. I answered with a response to what happened when I attempted to do so.
The thread isn't about Copaxone, but about why so many new lesions showed up after one year on LDN. After everyone added to the thread, my reply brought up why Copaxone wasn't a solution for me.
I'm sorry if I offended you.

Hi...my husband has been on LDN for the past 6 or 7 years. We just found out that he has developed several new lesions. I will tell you our story here (I apologize if this is too long, I'm trying to be concise!):

He started low (1.5 mg I think) and we did small increases of .5 over a period of years. We did the increases when he had a significant amount of time off from work, in case there was a problem! He had an MRI done after one year on LDN and being on the Swank diet. His lesions were going away, and getting smaller. Nothing was active. We started seeing an integrative medicine doctor after that, who put him on a regimen of supplements and natural thyroid medication to help his adrenal system which was messed up from years of steroids. He was feeling better and better all of the time. Every single symptom he had, including horrible numbness, went away. He was walking better than he ever had, gaining muscle, and his digestive system had improved significantly (again, it was very messed up from all of the steroids).

We got to 4.5mg on the LDN in December 2010. He was stiff for a few weeks, and then it receded. His numbness improved even further. About 7 months after going to 4.5mg, he started having trouble with foot drop. We decided not to panic; it had happened before, and life was stressful, so we thought it would just go away. He was not numb at ALL. Numbness has always been his first symptom that he was having a flare up. He usually goes dead numb, and then loses function of an arm or a leg. Since he wasn't numb, and he had a big knot in his back, we thought that he was getting muscles back that he hadn't used in 12 years, and that this was causing the problem with his leg. However, it just didn't improve. We tried altering his thyroid medication (which was the first thing that helped him to walk better several years ago), but that didn't help.

His walking got worse to the point that he got a cane last month. We ended up at the neurologist, who ordered MRIs and an EMG. The results showed that he has "several" new lesions, a few involving the brain stem. However, nothing was active. He was having vivid dreams and disturbing nightmares on the LDN, every night, so we just stopped taking it. From what I've read, those vivid dreams are only supposed to last a few weeks into changing your dose. This had been 1.5 years after he went up to 4.5, so I wondered if the dose was simply too high. Two days later, he was able to lift his foot off the ground, higher than he had in months. We went back to the neurologist again, and he said that his exam was significantly improved than the month before - that his reflexes were snappier. I wonder/suspect that the 4.5 dose was too high for him and perhaps that is what has caused the problem with his leg? Unfortunately, the neurologist only compared last month's MRI to the prior one, (which was in 2006) when he wasn't having any symptoms. I've asked the neuro to go back and compare to all of the MRIs since 2000 to see if maybe those "new" lesions were there previously. I still haven't heard the answer from him yet, but if they weren't there previously, this is indeed a documented case of someone developing new lesions while on LDN. Since the only symptom he has is his foot problem, and everything else had resolved, we were pretty confident that his lesions were going away. Imagine my shock to hear that he has several new ones.

We've just completed a round of IV Solumedrol, and are on the prednisone taper right now. Unfortunately, he did not improve with the steroids. Should have known better...nothing was enhancing on the MRI, but we thought we'd try it. Our plan is to finish the prednisone, and then restart with LDN at 1.5 and see what happens. He was stable for several years at 3mg of LDN. Does anyone know if too high a dose of LDN can cause old lesions to reappear? Or perhaps, if too high a dose of LDN can cause new lesions?

I sincerely apologize for the length of this...but just wanted to chime in because of the length of time he was on LDN and what's happened recently.

Hi there. Thank you for sharing your story.
In my opinion, the reason your husband started doing so much better especially in terms of numbness and digestion, was probably starting the LDN. I think many of us here can testify to the LDN making a huge difference. My major complaints were also extreme numbness and bowel issues. I started seeing an improvement right after I started LDN. I started at 1.5 mgs, went to 3 mgs, eight weeks later and then 4.5 mgs eight weeks after that. I have never had a vivid dream or a problem; however I did have some sleepless nights when increasing dosage in the beginning. Now, if I dont take 4.5 mgs, I dont sleep anywhere near as soundly and I find myself getting up during the night with bathroom needs.

Taking LDN shouldnt cause lesions to dissappear. THere is no evidence that they are designed to do this. Lesions can dissappear over time, and as you suggested, could have been missed initially because they were too small to see on the MRI when he had it. I get MRIs every 6 months- I couldnt even imagine getting them spaced so far apart, there wouldnt be enough evidence to see how new meds are actually working. Try to start getting these done more often if you can- you wil get alot more info from them.

You asked if a high dose of LDN an cause old lesions to reappear, the answer is definately no. Either, those lesions were there all along, OR they developed in the past year since the last set of films. BUT, no LDN cant make old ones come back....more than likely, they are completely new. You also asked if too high a dosage of LDN can make lesions start....no to that as well. HOWEVER, too high a dosage can make symtoms worse. Many people do better on 3 mgs rather than 4.5 mgs. The higher dose, for some people, can cause stiffness, muscle aches and joint pain. You really do have to play around with dosing to find where you "feel" best; but too much or too little isnt going to cause anything to happen.

I just spoke to a neuro who is doing a study on LDN and MS. He feels that LDN is simply symptomatic and definately not radiographical in nature. Im a perfect example. Over 100 lesions, all on my brain and brain stem (none on my spine). Clinically, Im 100% stable. I have zero complaints and am in perfect clinical condition. Radiographically, im a mess! Im such a mess, that my case is being studied all over the US right now. No one can explain to me why Im doing "so well" when my films point towards complete disability. I say its because I am taking LDN. But, most neuros in this country argue that its impossible.....until they come up with a better reason, im sticking with LDN and taking it.

Hope your husband starts to feel better. After 8 weeks on low dosage, try bumping him up to 3 mgs for a few weeks, see how he does and let us know?!

MSn