Multiple Sclerosis (MS) Support Group

This community is a place where members can discuss current events and weigh in on what's going on in the world.

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xaviermom74 03/07/2012

Hello to everyone, I know we all go thru the same things different from day to day, I have been officially diagnosed with MS 4 years ago symptoms began 10 years ago. Started Rebif briefly 2 years ago only took for 2 months could not take the side effects, since then have not been on anything. I take adderall for fatigue other than that really no issues that have prevented me from functioning. However as of late had some weird symptoms with numb foot, burning tongue and mouth and issues with focusing(eye), though I am somewhat back to normal though fatigue a little worse, no mri in 2 years as I now have to pay the 10% and with my other health issues type 1 diabetes, frozen shoulder at moment, I am kind of spent out. Anway I am thinking I need to take some kind of drug not sure what to do, I do know I dont want to feel any worse and I have no interest in my hair breaking off coming out etc, a side effect of the Rebif I assume. Any thoughts would be helpful. Thanks for reading my ramble.

djbritt 03/07/2012

I take Avonex. I had the flu like symptoms at first but now I am controlling it pretty good now. I take Aleve before my injection. I believe each one has a financial program. That helps me. Numbness in my hands was my first symptom. During that time I had major shoulder pain. Doc said it was a frozen shoulder. That was before I was dx. He gave me some type of steroid shot in it and it ease the pain. Doc said that stretches helps that too. I do understand about being broke because of doctors. They will drain your bank account. I wish you the best.

EPagain 03/07/2012

If you are looking at alternatives to Rebif the below URL has some good info. At least to give you a list of alternatives.

Good luck researching your options,
EP

http://www.dailystrength.org/groups/loved-ones-who-support-someone-with-ms/discussions/messages/13042864

deleted_user 03/07/2012

LDN.
Took away my foot drop, incontinence, and made my head clearer.
Cheap and no side effects.

deleted_user 03/07/2012

I've tried the whole c.r.a.b. LDN and settled on Tysabri. LDN is cheap and if I wouldn't have gotten a flare-up after 10 months I would still be on it. When I started it it actually helped me feel better and fatigue was NP. Try ldn it might surpise you.

deleted_user 03/07/2012

Hi all,

I have had ms for 15 yrs have taken every dtug out there, copaxone,zanaflex,ampyra,perks, and the list goes on but I now have gotten off all meds except the zanaflex. I have been doing Naet for the past 5 months and it's been a god sent.. the dr working on me tells me I have 9 more months and I will be climbing mountains.. I hope he is right cause it hasen't been easy and very expensive but in the long run to have my health back is all that matters.. I pray all you out there go to naet.com and do your research like I did.. trust me it will be worth it.. any question just email me at cmaylin1@comcast.net I honestly feel I will be illness free soon..

Carrie

lchoppel 03/08/2012

I honestly believe that all patients of MS should be on a therapy to reduce the decline in disease activity. You may not be able to afford the therapies now, but in the long run, with your declining health, the expenses will most likely way surpass the investment you make in your health now. There are many financial programs for MS therapies of all kinds. There is no financial excuse for not being on a MS therapy these days.

It appears that you are not tolerable to injectionables, and may need to move in the direction of Tysabri, LDN, or Gilenya. In the fall, a promising MS therapy, BG-12 will be available. All except for the LDN have financial programs to aid the patients in being able to afford the medication.

For your future health, please reconsider what you are doing to yourself by not treating your MS.

deleted_user 03/08/2012

Another LDN vote, been on it for five years. Stayed in remission, for years & this is the only MS med I take. Take it in a liquid method, makes it very affordable. One 50mg. tab lasts a year. 50 tabs cost $320.00 in Ontario.

While on LDN, progression is stopped, no needles, only side effect is sleep disturbance for the first week or so. It works wonders for incontenence as well.

Do your research & make your best decision.

xaviermom74 03/08/2012

I am not disagreeing in that I need to take something, however I am not interested in the side effects such as my hair falling out, feeling like death etc, my thinking is if rebif can make me feel that way will the others not make me feel that way as well. At moment I have so many things I got going, work, working on a masters, taking care of my mother, single parent to a teenager who has a busy schedule of his own, nothing like taking care of all this feeling bad anyway. I guess I might just have to sample everything and go from there.

deleted_user 03/08/2012

hi!! i have heard that ldn- is good- but we all are diff.- and sometimes we dont think straight- so ha!! look over-me- but im on copaxone- watch your diet- space your stuff u do all day sit- some-- lay down- i do that- it helps- good luck!! let us no what u decied!! hugs tickey

deleted_user 03/15/2012

Hi there,

Have you considered copaxone? I have been taking that drug for 15 yrs now and I do not have any reactions to it except once in a while the area that I inject is a little sore but nothing that bad. I wish you well with finding something that works for you. also look up NAET online I have been doing that treatment for almost 6 months now, it's truly amazing. I can tell you more about if interested...

Carrie

xaviermom74 03/15/2012

I have pretty much decided that copaxone will be the next drug I try, I am considering LDN withe copaxone as well, not sure which I will start first. I like the LDN as it might help me with my diabetes as well, one drug aiding in two issues so I see that as a positive. I have a friend who was on avonex and felt like death so she took off and on before quitting and then had a relapse she reports the copaxone stings initially otherwise no other problems. I follow a health regiment somewhat, I try to eat heatly at this point and exercise more as spring approaches. Thanks to everyone who replied, my neuro and endocronologist appt at the end of the month, I shall keep you all posted.

deleted_user 03/15/2012

Hi,
My husband was on Copaxone for a few years...no side effects. Nothing really noticeable at all from it though, good or bad. We too are very worried about side effects from the medications available and are currently switching to something else. Just doing the research, thats what we do...that would be my suggestion. :) good luck

deleted_user 03/16/2012

I tryed the LDN with no success but everyone is differant plus no pain medication while on LDN and it didnt help with my pain....but I have been On Rebif for 6 months now and still having flu like sytoms the next day I take premedication with shot but it still there.So I am calling Dr today thinking about changing drugs. think depressing is starting kicking in.But like you I know we need to do or take something to stop this MonSter.Stay strong and keep us updated

Cathy

ezone 03/17/2012

I have been on LDN for over a year and have noticed absolutely no help from LDN. My MS has progressed which is probably due to the fact that I am on Avonex (which has less intereron than Rebif) and the stress level that I have been on the last year. I have had problem after problem the last year which would make anyone have trouble with their MS. LDN did nothing as far as helping me. I am only taking it because I paid for the prescription but when my doses run out, I will most likely stop.

What I notice that helps me is: eating healthy, going to the farmer's market and getting chemical free produce, taking vitamin D, Evening Primrose Oil and Fish oil tabs. Eating healthy is a big plus.

LDN is a placebo as far as I am concerned. I do not think that it has helped me in the least, but everyone is different. As as far as Copaxone, be careful of the injection site problems.

deleted_user 03/18/2012

From everthing that I have read about LDN, is is a drug used
which will stop progression of MS. That's all. Nothing about improving symproms, just a med with few side effects & no needles.
Has been part of my routine for many years, is now the only drug I use for MS. No side effects at all.

Feel better that 10yrs ago, no progression. Seems better that a placebo to me. Online check LDNINFO.org

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