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Posted 6/1/2007 10:23 AM (GMT 0)

littlechina said...
Cecelia,

I'm glad to hear that you have reached a point where you can begin moving forward. The "lets wait and see" game is not fun to play. I hope your treatment goes well. Do you know what kind of treatment you'll be starting?

As far as SSDI and Medicare, I don't qualify because I am not disabled. I've looked into it all, believe me. Because I work and am not considered disabled, there really is nothing out there. But it's okay. I've pretty much resigned myself to the fact that there is nothing that can be done. I know there are people out there that have it a lot worse than me, and these services should go to them. I just need to find a way to manage my job with my fatigue.

If in fact you have MS, you could be eligible for SSDI. You list a lot of symptoms which are disabling, and many folks with MS (and other disorders) have found it impossible to continue their job, have quit, and applied for SSDI...and have been found eligible.  YOu need to have your doctors support, and it is a long and sometimes frustrating process..but you may indeed be eligible.   If of course you would rather work and can find a way to manage your symptoms and work too, that is for the better.  I don't know what kinds of benefits (like health insurance) you may be getting through your employment, but those benefits are usually better than SSDI anyway.

As for the drugs -- this is not directed at you Little China, but in general: I'm sorry there is such a misunderstanding among many of you as to the efficacy and efficiency of the drugs. No, they don't work for everyone, and the four usual drugs are not usually prescribed for people with primary progressive MS, but there is clear MISunderstanding about the "30% effectiveness" issue, and whether they're useful or not.

Yes, taking or not taking one of the drugs is entirely your choice. But please don't misrepresent them to others, particularly to folks considering taking some control of their MS by getting on one of the proven therapies.

Posted 6/7/2007 11:31 PM (GMT 0)
Depending on what type of ms you have, if you have chronic progressive I would say capoxzone is the best one . sherriehttps://www.healingwell.com/community/emoticons/yeah.gif I only took avonex 10 ywears ago but it did not help there were tomany sideeffecects, ie dizzyness, nauses felt like the flue more than just hanging in there.
Posted 6/8/2007 2:23 PM (GMT 0)
I feel like I owe it to myself to give it my best fight....so I take my rebif( was on betaseron for several years), and I take vitamins as well. I also have modified my diet, and get plenty of sun, What ever I read or learn about...i try it to see if it helps, and if it does , I add it to my regimen. The injections , as horrible as they are, do seem to keep the exacerbations farther apart, and lesson the intensity.I tried going without them a few years ago, and had a pretty bad exacerbation
Posted 6/9/2007 12:20 AM (GMT 0)
what kind of modifications to your diet did you make? Do you "juice"? I try to keep track of what I eat and any reactions I get. Can't do chocolate. Or beer!
So I do the 4Fs: fresh Fruits, Fresh vegetables, Fish and Fowl. Also try to avoid the 5 Cs: chocolate, cake, cookies, candy, and cocktails. I do drink red wine. Be careful about the vitamins. You don't want to take anything that strengthens the immune system. You say you get plenty of sun? Any problem with heat intolerance?
Posted 6/9/2007 4:40 AM (GMT 0)
I'm confused. Why wouldn't we want to take vitamins that strengthen our immune system? All the research I have read has suggested just the opposite.
Posted 6/9/2007 12:08 PM (GMT 0)

littlechina said...
I'm confused. Why wouldn't we want to take vitamins that strengthen our immune system? All the research I have read has suggested just the opposite.

In a person with MS, the immune system is over-reacting to the person's own myelin sheath.  The immune system's "job" is to detect "foreign invaders" in the body, attack them, kill them.  That's what happens when you get an infection, for example -- the immune system kicks into overdrive, floods the site with antibodies, kills off the infection, then settles down again.  A fever is a sign that the immune system is "working".

We don't want to take anything that stimulates the immune system even further -- it already is attacking the myelin, and destroying it! -- and some supplements, herbal remedies, vitamins, will stimulate the immune system.

The MS drugs modulate..moderate...dampen the immune system a bit, in an attempt to get it to stop attacking the myelin (which will then slow the progression of MS, a GOOD thing.)

So no, you don't want to take anything that will "strengthen" the immune system.  In layman's terms, it's TOO strong already!

Posted 6/9/2007 11:52 PM (GMT 0)
I went and did a little more reading on this too and that does make total sense now. However, it doesn't really say what NOT to take or how much is too much. I don't take anything unusual...vitamin C and a B complex...both support the immune system, as well as brain and nerve function (also great for depression!). I'll be sure to bring this up with my doctor, though, when I find a new one again. I'd like to make sure I'm not over doing it on any of my supplements.
Posted 6/26/2007 4:44 PM (GMT 0)

hi everyone

i have recently gone off copaxone from allergic reactions...i have skin damage and had a post site injection reaction about every other shot-- not to mention steroid posoning too.. how fun =) -- most important never lose your sense of humor.  the doc wants me to take a break for a month and then we will look at other alternatives like tysabri-- (interferons are a big no for me cause of the suicides in my family)  i think that the meds work if you think they do and you can control alot with alternative therapies-- cranio-sacro (sp is wrong) treatments are great along with good diet excersize (what still works and rest when you need to)  does anyone know about tysabri-- other than what the newspapers said-- anyone on it-- we are considering chemo too-- and no meds-- symptoms fluctuate alot right now but pretty much always dizzy and weak in the legs-- lots of pain too but could be from damage from the meds...

Hope and Love to all!!

Zoe Butterfly3

Posted 6/2/2009 2:37 AM (GMT 0)

I just finished my 3rd day of dx (steriod) and feel great right now.  I know I will feel blue in a few days for about a week.  I am currently on Rebif and was on Avonex before that for several years.  I was diagnosed in 1992 with MS through lumbar puncture and MRI and I chose to not use the lottery at the time for the beta drugs. There have been times I have looked back and wonderedif anything would have changed if I would have started immediately.  I'll never know!

I feel I am very fortunate becauseI have 2 boys age 12 and 8 and work fulltime as a junior high principal.  In the 17 years I have been diagnosed I have run 1/2 marathon (though I can't run know due to heat) and continue to be active.  Ironically my older sister was also diagnosed about 7 years ago and she is also going through steriod treatment right now.  What are the odds? 

I'm writing all of this because in a few days when I am thinking life is sucking due to the steriods bringing on depression, I want to remember that I have a lot to be thankful for.  Even though there are no cures for MS at this time, the various drugs make me think that I am putting off the wheelchair and all of the other dibilitating attributes of this disease.  In my mind I'm trying to do everything possible to postpone the bad while I wait for a cure.

Thank you for letting me ramble....

Sherri

Posted 6/14/2009 6:06 AM (GMT 0)
Hi Niki,

I do not do any conventional MS medication and never have. Although I have had RRMS since 10 years I was only diagnosed once I became SPMS and then not offered anything anyway. Not that I am sorry. I have heard many people say their drug is the best and just as many say that that one is terrible. Most seem to have nasty side effects!!

There is NO LIMIT on what you can do for yourself:
I do the following (from library books) self hypnosis, reflexology, eye exercises, (my optometrist says my eyes are stronger than when he last tested them) meditation, diet, (I feel fantastic on anti inflammatory diet & have no fatigue!), exercises. Also some that involve financial layout at the begining - self administered acupuncture, bi weekly, with a galvanic spa (recommended by my dr), Reiki, pranayama (breathing) yoga.

There are lots of valuable supplements e.g. fish oil, (for inflammation) tumeric, Vit D3, alpha lipoeic acid, colostrum, urologic (for bladder). Here the health shops all have staff who are natropaths & will give you FREE advice. Shop around until you find one you like and can trust.

There is one (cheap) drug which I am trying now & it is called low dose naltrexone & said to halt the progression of MS. Research is being done on humans (not mice) all over the world. Read about it on the web. Go to thisisMS site. It has been used in America for 10 years with positive results. I have been taking 1x3 mg at night, for 10 days & have noticed my leg is much softer & less spastic when I lie in bed. One night I woke feeling cold and put some socks on. WoW that is the first time I have been able to reach my feet in years. Also NO side effects. I sleep better & have a few more (nice) dreams.

Our MS society encourages people to do their own research. Doctors & the drugs are not GOD.

Good luck. Have fun, life (with or without MS) is an adventure.

"The past is history, the future is a mystery but the present is a gift"
smilewinkgrin smilewinkgrin
Posted 6/16/2009 11:06 PM (GMT 0)
 

Hi there, first of all let me say that I am a new member, but not newly diagnosed.  I am 26 and was diagnosed when i was 19.  I tried the drugs that they have, however I didn't notice much of a difference in myself while taking them.  To be honest I only tried Avonex and Copaxone (each for 1 year as per my neuro) and all I seemed to notice was the side effects.  I was still having to do supplimentary steriod treatments when things flared up which was about every couple of months.  I was dx'd with rrms.  After being disappointed I decided not to take the drugs against my doc's advice.  I have good days and bad days as does everyone, but now it seems like it's progressing.  My doctor has recommended tysabri but after reading the big bold warnings I got a little scared and discarded that option.  Does anyone have any recommendations for this drug??  I have reached a point now unfortunately that I need to consider it.  My symptoms are getting worse and maybe I have waited too long to start but it bears thinking about..

Thanks!

Ash

Posted 6/17/2009 4:05 AM (GMT 0)
Hi Ash,

Welcome to the board.  We have a couple members here on tysabri.  Hopefully they will stop by and let you know what they think.  You may want to start a new thread.  This one is a bit buried.  Just put "what do you think about tysabri?" or something to get their attention.  Our members stop by every few days or so.  This is a pretty quiet board. 

Anyway, from what I have heard, most people on tysabri like it.  There are some that can't tolerate it; they make antibodies against it or are just too sensitive to it.  Since it is a monoclonal antibody, if you are getting a ton of infections, then it is not a good med for you.  It can leave you exposed to infection. 

I am sorry the other meds didn't work for you.  I am not sure about avonex but for the copaxone, you may not have waited long enough.  Copaxone comes to full strength after six months.  For many, it doesn't seem to be working until after the one year mark.  I wish you the best of luck, whatever you decide.  Please post more and let us get to know you.

Posted 6/17/2009 7:00 AM (GMT 0)
I just want to say that I have never taken any MS drugs. I have had MS for 50 years but was only diagnosed when I became SPMS 14 years ago. Basically the neuros said they could not do anything. Anyway I am allergic to most drugs.

Recently I have started Low dose naltrexone which is said to halt the progression of MS. It is cheap & has no side effects. I have been taking 3mg per day for two weeks and have seen a decrease in spasticity, slight improvement in walking and improved sleep.

It has been used in the US for 10 years and some people have had very good reactions. But of course it is very individual. You CANNOT take it with many MS drugs as they cancel each other out..
Posted 6/17/2009 7:07 AM (GMT 0)
Quite right about staying away from vitamins that strengthen the immune system.. Once I took selenium and after 3 days MS was worse. Silly me. I wont do that again
Posted 6/17/2009 1:01 PM (GMT 0)
You can take LDN with copaxone since copaxone is not an interferon.  But you can only take it with copaxone.  Oh, you might be able to take it with tysabri.  I am not sure. 
Posted 6/17/2009 5:19 PM (GMT 0)
Niki, I am on Rebif butt, I am looking at alternatives. I spoke with a former coworker who's husband was on Copaxone and it made him ill. She told me of a tea they found, he is now on from a San Diego natural cures doctor. He now drinks the tea daily and has no simptoms at all. I am looking into this but, I am always s keptical  when I hear these stories. As I find out more, I will pass it on. RC    my email is [email protected]  
Posted 6/17/2009 10:55 PM (GMT 0)
Hey Ricky

I would like to try that tea! Let me know the details & I will happily be a guinea pig & let you know the outcomes smilewinkgrin
Posted 6/23/2009 11:15 PM (GMT 0)

I was given a diagnosis of MS and Lyme within one month of each other in 2005.  At the time, I investigated treatments for both diagnoses.  The treatment I looked into for MS (Copaxone) would have cost me $1,200 per month, even with my insurance coverage.  However, most antibiotics would be covered.  It was a no brainer for me--I started with the antibiotic treatment and have been on a roller coaster ride ever since (do well while on antibiotics, relapse when off antibiotics).  I added low dose Naltrexone about five months ago as well.  I am very good now with no new relapses.  My last brain MRI was reported as stable with no new lesions--the best report someone with MS could have, I believe.  I get a brain MRI in the fall of every year and will base any treatment changes on the results of my next test in September.  I have different insurance coverage now, which does cover Copaxone, so I have not ruled this out as a possibility down the road, depending on my disease progression.  My neurologist tells me I have a mild form of MS.  (Although it may seem mild now, it certainly wasn't the two years before I was diagnosed.)

I never recommend that anyone not take the immunomodulatory therapies or follow my course of treatment.  I believe you have to do the research, weigh the financial implications, and make this decision on your own in conjunction with a physician you fully trust. 

I believe it is a crime that the mark-ups on MS drug therapies (and all other pricey prescriptions, for that matter) are so exorbitant.  The low dose Naltrexone I now take is about $1 a day.

Posted 6/24/2009 7:20 AM (GMT 0)
I just wanted to say that I have never taken any MS drugs (I was only diagnosed when I was secondary progressive). I have been taking Low Dose Naltrexone (3mg) for the last month and so far its good. I sleep better, Have no restless legs, signifcantly less spasticity at night, I an walking a little better and I feel great. I have no side effects. But I need to wait a year before I can say if it has halted the progression as it is said to do EVEN if you are SPMS.
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