Okay, here's the deal. . .recently it was my birthday, so I thought that something "fun" but within the rule book would be okay. I've been following the diet for about a year now, so I thought that I could use something of a treat. My treat was a gluten free, soy free, egg free, dairy free, everything bad free chocolate cake (aside from the cocoa). I scarfed it down like I hadn't had anything in a lifetime. The problem was that it didn't make me have symptoms bad enough to steer me away from another treat. SO, about a week later, it was my son's birthday party. I ate REAL cake and some chips and dip. I had real symptoms after that for several days and thought to myself: "I need to get a grip here!" But this week I made another mistake. I bought another gluten free, wheat free, etc. free cookie mix. I ate every single cookie in a 24 hour period. It's like I can't control myself! In fact, it's almost like I'm having such an incredible craving that it's more like an extreme allergic reaction. The cookies were finished yesterday, and I just ate something else not on my list. Long story short, I now have a piercing headache, all finger tips are numb, head is twitching like crazy--I HATE that, some more personal symptoms, and so on and so on. Anyway, I'm writing because I HAVE to get back on track. It's like I've opened up an insatiable inner drive to just eat and eat sweets and a few other things. I am convinced that the strong urge to eat it (almost like an addiction kind of feeling) indicates how seriously these types of foods impact my particular MS. The difference in how I feel is huge, and I've gained amost 10 pounds in these couple of weeks. This has been a strong signal in the past that I'm about to have a significant exacerbation. My body is very unhappy and is reacting very poorly to my recent binges. My goal now is to push through the urge over this next week or two or three--however long it takes--to get myself back on track. It really feels like I'm pushing through an addiction withdrawal. .. it's a horrible feeling. Who would think that a fun treat made of all somewhat safe things (aside from the cocoa) could have thrown me this far off track. Ugh.
Very interesting and helpful
Very interesting and helpful info. . .thank you. I have heard that some oral meds are expected to hit the market here, also, but I don't yet know the name(s) of it. I'll have to do some research to see if I can find out.
Congratulations on the improvement in your recent scan! I think that is great news and adds inspiration to keep going forward full speed on the diet!
I am in the midst of
I am in the midst of decisions regarding Avonex, (stopped taking a year ago), and maybe taking Copaxone. To cut a long story short, the Flu from Avonex was kind of manageable as I could sleep through it, but I slept for 18+ hours and the next 8 hours would be a energy zapped. Add half a day prior of anxiety and a couple of days re adjusting my sleep pattern and I had to ask was it worth it. During this time I had little symptoms other than digestive which I remove from my analysis as I have also been converting to the diet at the same time. The main thing is my cognetive glitches which are more apparent in the last year or two. This side of things seems no worse or better with or without copaxone.
On a much brighter note, I have my second scan since the diet and the inflamation had reduced :-)
In the UK they are expecting a new drug named cladribine to be approved for general release in 2011. It may be sooner or later in your country. It is oral and so far has had good success in trials.
Sarah, Thank you again for
Sarah, Thank you again for your helpful info/insight on Copaxone. I really appreciate it! It's hard to find real people who can share their experience, versus the sales pitch that I keep getting from the doctors and the pharmaceutical company. It's good to hear a real experience.
I like your idea of putting picturs in the food diary! Oddly enough, some of our pictures would be the same! Wine and chocolate for example! I'm doing "okay" at getting back on track. I guess I had hoped that my turn around would take hold like lightening speed. It's going to take a while I think. I'll be curious to see where I am in four weeks. Every day I take a page in the journal to document any and all symptoms or thoughts. . and then the next page or two to document every thing that I eat or drink. It is helpful, for sure. I'm already noticing that my intake of sugars--just natual sugars--may be too high. I'll keep recording. I don't know if you are also recording all symptoms everyday, but I am finding it to be helpful. Also, I've set up an appointment next week to do the Elisa test at an office here. I hope it gives me some more feedback on my food sensitivities. We'll see!! Hang in there to you, too! I'll post any important feedback from my Elisa test, if anything of interest comes up! Ana
Hi again!! Regarding the
Hi again!!
Regarding the panic/heart attacks, i too was very reluctant to start copaxone, but never experienced any effect whatsoever!! I was kept at the hospital for an extra hour after my first shot so if anything untoward did occur i was in the right place, i`m sure this will be the same for you.
Believe in the diet-i am so glad we seem to be getting everyone sharing our experiences once more after all the annoying spam turning up on here, i feel so much more motivated again!!
Oh, also, definately do the food diary, i started mine about 4 weeks ago, and i added pictures of foods not to eat,eg, wine, pizza, chocolate etc, and one of the dreaded wheelchair to spur me on, and some great motivational quotes, my favourite? " Those of us who say it can`t be done should`nt interrupt those of us doing it "
Keep going!!!
Regards Sarah.
Hi to you, too, Soprano4!
Hi to you, too, Soprano4! Thank you for your info on the meds that you've tried. I was thinking of Avonex, as well, since it is only once a week, BUT I haven't been too excited about the neutralizing anti-bodies that they have found form to it. . .that's a lot of pain and work to go through just to have it become null and void anyway at some point. So, I was leaning toward Copaxone, IF I go on anything. It's a very tough decision. My next appt is in four months. At that time, my MS specialist suggests that I should be on the Copaxone for at least two months so that we can evaluate how it is for me. My plan is to really work hard--even harder--on this diet for the next two months. If I don't see some results to show that I can have some level of control over this, then I will consider the Copaxone and I would still have about two months left to try it before my next appt. I'm hoping at that point I will just laugh at the suggestion, b/c the diet will be working again in full swing. This is my hope. Also, I appreciate your input on the autoinject. I was definitely leaning toward that, but I can see how it might be more traumatic in the long run. Congrats on the damaged areas going away/healing. It clearly states in all of the Copaxone literature that the damaged areas are permanent and will remain so. I think it's wonderful that you're seeing good results from your efforts. My biggest fear with the Copaxone is the possibility of the panic/heart attack like attacks just after injecting! THAT does not sound like fun! Have you experienced any of those attacks? --justme
Hi again justme.. Regarding
Hi again justme..
Regarding a post i see you put on another topic about Copaxone, i hope i can answer a few questions for you. I have been on Copaxone for the last 3 years with no adverse reactions. I originally started on Avonex and suffered horrendous side effects for more than 18 months, i am more than certain that this made me more disabled, as i became unable to continue doing the things i usually did due to losing 3 days out of my week with flu like symptoms, and when i felt back to normal it was time to inject again-my fault for thinking i was taking the easy option with a once weekly injection!!
The only thing i would say is, if you are not at a point where you are losing mobility, think long and hard before starting, given the choice if this book had been around 5 years ago i would have said no thank you, i`ll take my chances, i keep on with it because i have`nt relapsed for nearlly 2 years, a definate blessing for someone who was having them religiously every 7 months. Also take into consideration, can you cope with injecting daily? Truthfully i find it a doddle, i did start withan auto inject, but this can be quite traumatic to your skin and can cause lipoatrophy, which is fat loss at injection sites and it can look unsightly, but not everyone experiances this. I had it slightly on my arms thighs and stomach, so my ms nurse advised manual injecting, and i found this much better than the auto inject. Amazingly i have more or less eradicated my lipoatrophy much to the amazement of my nurse-this is`nt supposed to happen-i put that solely down to the diet, and thankfully she agrees!! Hope this helps you to make a decision, and keep on with the diet.
Kind regards Sarah
Here's a brief update. .
Here's a brief update. . .since my post on falling off the wagon I had a doctor's appt with my MS specialist. You see, I had an MRI done a couple of weeks ago--deep in the midst of my falling off of the wagon! Not a good time to have an MRI. Anyway, my MRI came back worse, meaning that a large lesion that HAD gone inactive is now active again (well, I could have told them that with my symptoms). So, the doctoral guidance again is for me to start on the shots--possibly Copaxone. This gave me a serious kick in the behind. I've since started a food and symptom diary. I am determined to see if I can make these symptoms go away!! My hope is to make the symptoms go away, proving to myself AND my doctor that I CAN control this through diet. A friend of mine said something that made a lot of sense to me: "better to struggle with being on the more restrictive diet than to struggle with potential side effects of the meds". So, I'm going to cram like heck on the diet for these next two months. If I see significant improvement again, then I will take my journal to my next doc appt with me and see where we go from there. If I do not see significant improvement, then I will consider the drugs. By significant improvement I am looking to specifically rid myself of these newer and recently re-activated symptoms--that will tell me what that large lesion is doing. Will keep you posted. . .Soprano4 and Jomona, it's good to know that we are all working hard at this together. There is strength in numbers.
hi justme , its hard to stay
hi justme , its hard to stay focused some times . the diet is like a lab experiment , and when things go awry we have to examine the data and look at our mistakes . these arent bad things ,they are time to reflect on the outcome of making a wrong eatting choice . after all we are only human and temptation will allways be out there so take a moment and just call it a learning experience , we are vert aware of our bodies now and thats what this is all about ,learning to listen to the feedback of our digestive system .
take care
ken
I can totally relate to your
I can totally relate to your story justme. I have been on and off the diet now since February. A combination of stress and a close family bereavement totally threw me off track and i' ve struggled to stay focused since. The good news is though I've never totally given up and I can't say I've gone back to feeling as bad as I did before starting the diet, but I agree that once you stray those good tasting foods are hard to give up. My big downfall is when the dreaded takeaway food and alcohol rear their ugly heads. I'm from the uk and we have a terrible tendency to drink more than we should- I love wine- it doesn't like me, but I still give in every now and then and suffer the consequences!! Be strong get back on board- I'm right behind you helping you up!!
Regards Sarah.