Thank you for a quick response-- I am looking forward to getting some great feedback adn connect with other MS patients-- Looking for suggestions on alternative therapies, feedback on people who have tried copaxone or other meds --- Copaxone really hurt me-- it felt worse than the illness and I have had so many steroid infusions now I just feel like I am poisoned. I am open to anything and just need some help. Truthfully I wish I was alone in this, and no one else had to have MS...cause it is not all that fun. My MS was dismissed as anxiety for so many years they didn't get to it till it had already done some damage but I am hopeful and positive...I was always an avid hiker and traveled alot in my 20's by myself so not being able to drive or really walk on my own is taking major getting used to but my fiancee and family are great... I am 30 years "young" now but sometimes I feel like I am way older than that. I am hoping for a remission-- but I have alot of drugs to clear from my system (roids and copaxone) till I can feel what my actual bady is doing-- Hope to hear from people soon...
Hope, Prayers and Hugs
thank you all for gettin back to me so quick nice to know i am not alone-- although like i said i wish no one had to have MS.. anyway beginning to plow my way through another day at the office... still curious about anyone who has tryied to go it without meds??? I am glad Copaxone is working for some of you-- and I do not plan on letting this all get me down--the mind alone is a powerful thing... God Bless
Hi Zoe Butterfly,
Just wanted to say welcome, and I’m so sorry to hear that you’ve been having such a hard time. I am another Copaxone user, and while I tend to have a really hard time tolerating medications, I am doing pretty well on Copaxone. I hope that the Tysabri users will be able to provide you with some insight into their treatment experiences. From the little I’ve read about it, it does seem that a lot of people are having positive results. In terms of alternative medicine and ms…you might be interested in the info at the website below. Once you get to the site, click on the big “Alternative Medicine” link.
One thing I would suggest is that you do some research on the practitioner you go to and make sure he/she is legit. There are a lot of people who genuinely want to help and are qualified in their fields, but because this is an unregulated area to some extent, there are also a lot of people trying to make a quick buck and take advantage. Here’s a link that provides some suggestions about how to choose an alternative medicine provider:
While I personally don’t believe there is an alternative medicine “cure” out there and am a bit leery of ingesting random herbs and vitamins, I did try acupuncture and biofeedback while in limbo, as I was looking to get some symptom relief. I honestly didn’t notice any difference from the acupuncture, although I have heard that some people have good results. I occasionally do have less of the brain fog after a biofeedback session, and I also find it useful in combating stress. I have done biofeedback for almost a year at this point. It is not a miracle cure/fix by any means, but I will take what I can get J. I also find that massage helps some of my pain and spasticity issues.
Here is some info on biofeedback http://www.mayoclinic.com/health/biofeedback/SA00083
Best of luck to you, and please continue to check in and let us know how you are doing
Hey Zoe Butterfly,
Wow!!! You are getting married! That is so cool and congratulations are in order. You go girl!!! Have a wonderful day and enjoy yourself. Stay cool. Again, congratulations and best wishes.
Love and prayers,
Thanks for the congrats-- well not only did i make it through work but my fiancee and i took my 40 pound 9 month old super energy puppy for a mile walk.. it helped my pain for about 2 hours after... one day at a time right-- funny one of my biggest supporters and closest friends here is gretchen but i call her chen-- how are you feeling? what meds are you on again? how do they work for you--
I looked at the bio feedback --sounds really cool-- gonna look into it furthur--i highly recomend reflexologoy, craniosacro treatments and reiki-- they all help--
thank you everyone please keep chatting with me-- we are never alone
Peace Hugs and Hope
gretchen-- just looked back-- copaxone -- see i ran out of places to shoot it cause of histamine build up from allergies and i had post injection site reactions every other time i did them-- so they tried having me take it every other day but still ran out of places-- it was frustrating and now there are huge painful lumps under all my skin-- hives and rashes pop up like crazy and my bones around the sites hurt so they had to take me off it-- do you not experience any side effects-- they said it doesn't help that i only weigh 92 pounds and have no body fat-- i eat like crazy too
Cool, what kind of dog do you have???? I am a huge dog lover and I have two Staffordshire Bull Terriers that I just adore. I do not have any reactions to copaxone but ( unfortunately ) I have a lot more body fat than you. And I have heard that that can really make a difference. I get the occassional lump but really nothing to complain about. My only complaint is that the copaxone may not be working for me. I had a huge flare 7 months after starting treatment and my neuro is considering an interferon for me.
Congrats on your upcoming wedding! I hope you have a fantastic day.
With regard to Copaxone and weight: I am not allergic to Copaxone, but like you, I found it was hard at a low body weight. I am a small person, and when I started Copaxone, I was pretty underweight. I noticed an immense improvement in pain and injection site reactions when I gained a few pounds back. I go up and down now (basically, my dizziness flares up and I stop eating and exercising). Every time I lose weight the shots are harder (but still not bad), and then they ease up again when I am able to increase my body fat. Interesting stuff, huh.
I am sorry to hear that you are having pain and dizziness. Dizziness is one of my most problematic symptoms, so I know what a bummer it can be. I wish I had some good tips, but I haven’t found much that helps it except rest and lightly touching solid surfaces (i.e. walls) as you walk by them if you are having balance problems. If you have nausea from the dizziness, you might try meclizine. It is med for motion sickness, and can be found OTC at most drug stores.
I love dogs too-- although my pooch Luna can be a stressor when i am feeling rough she also has helped immensley even if it is distracting me when i am really feeling rough...she is a pit bull mix-- her mom (hippy) used to be my dog -(the pit bull) and her dad was a lab beagle mix-- she must have gotten her dogs personality traits cause hippy was super mellow =)
It is in pill form but it is very complicated. First of all it is not FDA approved in low dose (4.5 mg). It comes in 50 mg tablets and you must find a compounding pharmacy that will create the 4.5 mg capsules for you. This will only happen with a perscription of course. And there is very little clinical research that indicates that this drug is effective. It is being used by many people with autoimmune diseases and having quite good results with some (crohn's I think). My doctor is willing to give it a try but she holds little hope for it. She is willing to let me experiement with it though. I am leaning towards that but as of yet am still undecided. It may be like so many things in the MS world in that it only works for some people.
I hope that helps. Kiss that fat-headed dog for me. Is Luna short for Lunatic??? It is a cute name.
Yep that does sound complicated but i read some great results on that and the tysabri
luna wasn't short for lunatic till now =) that puppy phase of teenage rebellion-- she is bugging us to go for a walk right now--- my back is in tough shape (spinal lesion) and i am dizzy and tired after work but sometimes a walk helps--we'll see-- i am gonna mention that med route to my doc and see what he says-- i am still interested in tysabri feedback too -- have you considered that -- i don't want to so interferons-- do you have any symptoms right now --what is most bothersome and what helps--thank you for so much feedback--
Hugs Hope and Peace
Hello again Z Butterfly,
You know you can always e-mail me. If you want. My e-mail is in my profile. I don't mind telling you anything you want to know here but I have bored many with my stories. Hahahahahahahaha. My baseline symptoms are constant vertigo and balance issues, numbness in both feet, numbness and spasticity in my left knee, mild vision problems ( tracking, reading ) L'hermittes, and some bowel and bladder problems. I also suffer from terminal boredom that is only relieved by laughing and causing mischief.
Gretchen -- I sent you an email message... I am just full of questions -- i was diagnosed august 2006---- would you consider tysabri? i am still awaiting some feedback from people on that