Sunday, January 22, 2012


sometimes this disease really annoys the crap out of me. no one know the cause of it.... but there are all of these theories, no one knows how to completely treat it but there are all of these medicines that can work for some and not for others. now i am finding out that some vitamins you should take and others you should stay away from.

i went to a seminar on thursday that was put on by my neurologist and she spoke about symptoms and symptom management. some stuff i knew already but others i didnt know. so I have been taking a nutrition pack of vitamins that are a multi vitamin, fish oil, vitamin d magnesium then i have been taking about 40000 IU's of vitamin D, an anti inflammatory that has bromolein, ginger something and rosemary something and a B complex vitamin that has B 12, B12, folic acid.... ect

plus i am taking my interferon medicine Rebif.

and I feel worse than I have ever felt with my MS in within these last 6 months.

I feel like i have done all of this research and trying to figure out what works best and what other people do for this disease and how people manage and live. Which is part of why i started this blog in the first place. I bore Dustin to death with him hearing about MS and hearing about my aches and pains so this gives me a place to put all of it.

Basically I should really only be taking vitamin D and maybe B12. Good thing I am pretty much finished with the vitamins that I had anyways. There isnt a specific MS diet that I should be on other that to try to eat healthy. So I shouldnt worry about a Glueten Free, Paleo, Vegan, Vegetarian, Raw..... any of that stuff that is out there. Its hard when every one that has been diagnosed with MS has different symptoms and different levels of all of their nutrients so there isnt going to be one particular thing that is going to work for everyone

I am still having the numbness, tingles and pain in both of my legs. I had to ride with a friend back to my home town to go bridesmaid dress shopping because I knew i couldnt handle an hour and a half of driving. If I am still walking as bad as I have been since friday, I will probably be calling my neurologist.

It sucks when you feel like these extreme MS medications arent working and then you have the thought of "what if I am getting progressive MS" going on in the back of my head. I still cant get used to the pain of the needle when i give myself the shots on the top of my thighs. I makes me miss being on Copaxone.

1 comment:

  1. Hi Amber, My daughter have MS. She was diagnosed in November of 2007, soon after her diagnosed, her doctor put her to Rebif..which did't work for her, while she was on Rebif, she had admitted in hospital 3 more times with relapse and if I recall collectedly, took her to emergency 7~8 times, her conditions somewhat gotten better but really gotten worse in some points. One point she almost lost her sight, pain and numbness was always there, and the saddest thing was that she had to give up her education, she was in her 2nd year at college wanting to become a doctor. we had talk to her doctor about Rebif not doing any thing for her but he would't look into other options for her and thats when I realized that she not only need to change her meds but change doctor...first we went to see a doctor whose at University of Maryland MS center where he introduce Tysabri and then we find local doctor whom now shes been seeing for three years told us about Tysabri as well. Even though Tysabri has serious side affect that might develop something call MNO(I thing thats collect term) we decide to have it....all the drugs are not meant for everyone till this day, my daughter had not have any new lesions nor relapse since changing to Tysabri. She is a make up artist working very hard. She had gone through a lot that first year while she was on rebif... if you think Rebif is not doing any thing for you, you should talk to your doctor about other treatment options and find the one that will work for you, you are the only one who would know what works and not if you can't get him/her to work with you then its time for you to find a doctor who can see what you are going through, with or without MS you have every right to live fullest life without pain or the discomforts. As a mother who've seen precious daughter going through so much pain, my heart goes out to you. God bless you.