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Posted 6/26/2007 6:56 PM (GMT 0)
hi -- i am new on the site and frustrated-- i was diagnosed august 2006 and put on copaxone -- had major post site injection reaction so i went off-- then for four months without meds felt great-- even though i have had it for 10 years (estimated from damage already done) i began to have some vision trouble in late feb-- my mri showed 14 new lesions-- yikes!  so i was back on copaxone- and was sent to "the best doctor in the area" they were really busy and stressed me out --- allergic to copaxone so they put me on it every other day-- then they did monthly rounds of methopred-- i had a 5 day in march 2 day in april 2 day in may and 2 day in june-- felt much worse even though my mri showed improvement-- i am back at my old docs taken off copaxone again (tissue damage and severe reactions) because of the suicide rate in my family i am not a candidate for interferons-- considering tysabri--  dizzy and off balance and in pain-- any suggestions?  i am not on meds right now and won't be for a month to let my system clear out-- they think i had some steroid poisoning-- help????

Prayers and hugs,

Zoe Butterfly3

Posted 6/26/2007 10:50 PM (GMT 0)
Hey Zoe

Wow!! What a hard time u've had!! I"m so sorry, but really glad u've found us. I'm not dx'd and can't really speak to u on the ms meds, but wanted to let u know i was glad u'r here and hope to hear u'r doing better very soonl. Please feel free to ask any questions u may have. The people here are great and always willing to help whenever they can. Also, we have live chats on Mondays at 6:00pm weekly. It's a great way to get to know the other members as well as getting some real time answers to u'r questions. Hope to see u there! Take good care of u'rself, again, welcome to the board!
Posted 6/26/2007 11:16 PM (GMT 0)

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

Zoe Butterfly3 :-)

Posted 6/27/2007 2:25 AM (GMT 0)
Hi Zoe,

 

    Welcome to the site.  We are happy you found us and there are a lot of great people here so please feel free to ask questions or share your experiences.  I'm sorry that you can't tolerate Copaxone, some people do quite well on it and others just can't tolerate it like yourself.  My husband's initial symptom was fatigue and for many years he was told he suffered from depression.  A lot of people here also have been diagnosed with anxiety in the beginning as well. 

 

    We do have a few folks here on Tysabri, and hopefully they'll be along soon to answer your questions on it's effectiveness.   Take care of yourself and I do hope you start to feel better soon.

 

 

Kimber

Posted 6/27/2007 4:13 AM (GMT 0)
Hey Zoe Butterfly,

Wow, you have had a rough time.  I am sorry.  I have been on copaxone for several months now and it has not been a problem.  I am so sorry you didn't do well on it.  We have others here that did not do well on copaxone also.  I can relate to the steroids being bad though.  I did a five day stint on the solu-medrol and it did not really help and I felt awful.  It just wrecked me.  I will not do those again.  Hang in there and good luck.  The tysabri may be the way to go.  There will be others along with more info on Tysabri.  Welcome to the board; enjoy!  Do a search on low dose Naltrexone, that is an interesting option. 

Love and prayers,

 

Posted 6/27/2007 9:44 AM (GMT 0)
Hi there,

sounds like you've been through the mill! Don't think I can offer any support.....but wont you to know that I'm another one here 'ready to ride the wave with you'!

Hope things improve soon, and you get the drug situation sorted,

Kas
Posted 6/27/2007 12:31 PM (GMT 0)

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

Zoe Butterfly

Posted 6/27/2007 7:05 PM (GMT 0)

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.

 

http://www.mscenter.org/index.php

 

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:

 

http://www.mayoclinic.com/health/alternative-medicine/SA00078

 

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

 

Sunny

Posted 6/27/2007 8:55 PM (GMT 0)
Thank you Sunny for all of the info-- i will check out those sites-- just survived another day of work-- in pain an dizzy though-- does anyone have remedies for that stuff???  If I had this for 10 years , as they said and I used to get exacerbations and fix myself back the mind must be capable of alot right?  Well it is 93 out today so I don't know if I am walking but at least I made it through another day of work-- I am getting married Sunday so I hope to feel functional that day for sure--

Peace Hope Hugs

Zoe Butterfly

Posted 6/27/2007 9:27 PM (GMT 0)

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,

Posted 6/27/2007 11:52 PM (GMT 0)

Gretchen

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--

Sunny

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

Zoe

Posted 6/27/2007 11:55 PM (GMT 0)

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

Posted 6/28/2007 12:19 AM (GMT 0)

Hey Zoe,

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. 

Love and prayers,

Posted 6/28/2007 3:27 AM (GMT 0)

Hi Zoe,

 

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.   

 

Sunny

Posted 6/28/2007 10:58 AM (GMT 0)

Gretchen

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 =)

Sunny, Gratchen and anyone else

I also have intense anxiety (with tacocardia) in the morning and go through a morning debate -- am i having a heart attack since i have apin in my left arm but it is mostly by the old shot sites-- I am on Klonopin which helps but it is really tough to wake up like that basically every day-- i have had one or 2 days in the past 2 weeks it wasn't intense but mostly it is-- I have it a little in the evening too around 8-- i am looking in to a counselor-- does anyone else experience anxiety

Hugs Hope and Peace to all and hey HEALTH too --

Zoe Butterfly3

Posted 6/28/2007 7:33 PM (GMT 0)
GRETCHEN-- I LOOKED INTO THE MEDS YOU SUGGESTED-- SOUNDS TOO GOOD TO BE TRUE-- IS IT PILL FORM-- DO YOU KNOW PEOPLE ON THIS? 

Posted 6/28/2007 9:51 PM (GMT 0)

Hey Zoe,

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.

Love and prayers,

Posted 6/28/2007 10:17 PM (GMT 0)

Hey Gretchen

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

Zoe

Posted 6/28/2007 10:59 PM (GMT 0)

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. 

Love and prayers,

Posted 6/28/2007 11:15 PM (GMT 0)

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

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