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    Old 07-18-2014, 09:04 PM   #1
    chbue070780
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    Mother with MS - Needing Advice

    In 2010 my mother was diagnosed with relapsing-remitting MS and in 2013 she had developed secondary-progressive MS. Her condition was diagnosed early and our family educated ourselves about her condition, understanding the possible outcomes without proper treatment, believing we were involved enough in her care to prevent her MS from advancing – in hindsight I believe we put too much faith in medical practitioners and pharmaceutical literature and not enough effort into becoming ourselves specialist in the understanding of her disease.

    In the last four years we have tried multiple drug therapies, each time beginning with a hopeful outlook and ending with disappointment either because the medication stopped being effective or because the side effects were too much for her to bear.

    She was first put on Copaxone and we were told by her neurologist that this would reduce the frequency of relapses and that it would reduce the progression of disability only to find a year into treatment that the frequency of relapses remained the same and upon speaking with a different neurologist we were told that the clinical trials of Copaxone did not show any advantage in halting disability progression and that it was approved by the FDA for reducing the frequency of relapses only - we were blatantly misinformed by her first neurologist.

    The next treatment was Betaseron and it did seem to lessen her relapses for the first year until it suddenly stopped working. We were told by her physician that her body may have developed antibodies and they ordered bloodwork to be sent to Athena Diagnostics which confirmed the presence of Betaseron antibodies so she was switched to Rebif, which gave the same results as Betaseron did in the beginning but stopped working altogether in November of 2013.

    Following all of this she was prescribed Novantrone but could not tolerate the side effects and stopped using it after just four months. She refuses to try Tysabri because of the risk of PML – she hasn’t been on any treatments for the last four months and her symptoms are getting worse. She says she “just needs a break” but I worry that she’s given up hope because she’s fighting a disease which at present there is no cure for and that the medical community has only a very weak understanding of while everything she has tried has been mostly ineffective - leaving her feeling worse many days.

    As her son what can I say to convince her to keep fighting? I don’t blame her for feeling the way she does but at the same time I won’t let her give up - I don’t know what do now. If anyone has any ideas then please let me know.

    Last edited by chbue070780; 07-18-2014 at 09:45 PM.

     
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    Old 07-18-2014, 10:07 PM   #2
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    Re: Mother with MS - Needing Advice

    chbue070780,

    Welcome

    I used to live in Kingwood once, it is where my youngest was born.

    If you look at the top of the MS forum you will see the new guidelines for progressive MS. Your mom can do well without meds and if she is now progressive, the meds are not recommended. I have been progressive for 37+ years and have taken no meds or steroids. I do take vitamin D3 daily to maintain my levels at the amount my doctor wants me to maintain.

    If your mom is careful and vigilant, learning her triggers can help her life. It gets hot and humid as well as just hot down thee. As MS progresses, heat intolerance increases. The increase in core body temperatures can certainly weigh heavily on her condition. There are probably other triggers too. Tracking her symptom onset via a symptom journal can help her determining what triggers she has and what ones she can avoid.

    Pool therapy and low impact exercise can benefit her (in moderation) and daily stretching. Also, be mindful of cognitive problems. Brain exercises help, but mental rest is also needed.

    MS is not fatal. With care and support, your mom can live a med free life with MS.
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    Old 07-30-2014, 06:43 PM   #3
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    Re: Mother with MS - Needing Advice

    I appreciate your feedback very much. Have you ever heard of an herb called Annadh? A friend of my mother who's from the middle east recommended trying it but I can't find much information online. She said it works to decrease inflammation in the brain and spinal cord. Maybe I'm grasping at straws but if I can find somewhere to get some from then we may give it a try.

     
    Old 07-30-2014, 07:47 PM   #4
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    Re: Mother with MS - Needing Advice

    chbue070780,

    I think the spelling is off. Be that as it may, reducing inflammation is what the doctors try to do with steroids. MSers experience inflammation, but it is not continual. There are no cures. Also many herbs can be dangerous and the long term effects are unknown. There are better and safer things. I would not want to potentially harm your mother though you mean well.

    I think that if you learn what your triggers are and which ones you can avoid, you can reduce the impact of MS. MS is a progressive chronic disease which will progressively worsen over time, BUT the rate varies. Our body's ability to deal with MS will differ from another MSer.

    I would say that you should save your money and make an effort to assure your mom's quality of life is protected.


    Around the house, adaptive equipment or home modifications can help her greatly.
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    Last edited by MSJayhawk; 07-30-2014 at 07:50 PM. Reason: typo

     
    Old 08-03-2014, 02:33 PM   #5
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    Re: Mother with MS - Needing Advice

    Hello Chbue070780.
    I dont want to dissappoint you, but it does sound like you are misinformed. First of all, MS is a progressive disease. Everyone who gets it progresses- but not everyone progresses at the same time. My question is who told you this went from Relapsing/remitting to progressive? Or, are you just assuming it? The fact that she still has relapses- and symptoms, may not be that she has moved towards progressive MS. Also the fact that the doctors are still trying to prescribe DMDs- makes me think its still relapsing/ remitting. You dont prescribe DMDs to a progressive MSer.
    You also said "they caught it early". MS is usually shown in patients between the age of 20-40....if your mom assumably was over 40, thats not early. More than likely, she had the disease for MANY years before they found out, probably because she wasnt showing symptoms or having issues which took her to the doctor. For most of us, "the big" one that led to an ER or a doctor, is when we found out we had MS.

    Lesions- how many does she have? I have over 100 and not disabled at all. I work 50 hours a week and only sleep in my own bed about 10 days a month. The rest of the time I am traveling around the country. Like your mom, I have been on 9 DMDs- most of them have stopped working, I have developed antibodies to many of them. I also had severe allergies to Copaxone and to Gilenya.

    Herbs- stay away from. There is no magic pill or supplement which will help MS...in fact, it can absolutely worsen it. Herbs are not FDA approved, and you could be buying sugar in those capsules for all you know....but even if it is "the real thing" chances are you are going to stimulate her immune system, throwing her into overdrive and without knowing it, cause her more problems.

    MS is a very livable disease. You dont have to worry about her giving up. You cant die from it....as far as taking care of herself- exercise is important to mobility, but it should be light exercise- pool therapy, yoga, stretching..nothing which is stenuous or overheating to the body....also eating right is important...a diet low in fat and high in veggies/ fruits, lean meats is important. BUT there are no "no- nos". She can have a glass of wine or a beer, she can eat pizza or icecream...everything in moderation.

    Please introduce your mom to healthboards, we are here for both of you to support and answer your questions. Let us know how we can help.
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    Old 08-03-2014, 11:18 PM   #6
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    Re: Mother with MS - Needing Advice

    If your mom is in fact secondary-progressive, the medications will likely not work at this point.

    Just because everything she has tried has been mostly ineffective, doesn't mean she has tried everything. If you have not already done so, I suggest you read Dr. Terry Wahls' book, The Wahls Protocol and discuss it with her, and then help her implement the protocol if her doctor agrees.

    Last edited by Administrator; 08-24-2014 at 10:58 PM.

     
    Old 08-09-2014, 10:09 PM   #7
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    Re: Mother with MS - Needing Advice

    I appreciate the advice you've given and ordered Dr. Wahls' book. My mother does not want to try any medications but she's very interested in seeing what the herb her friend mentioned will do. She's also starting water therapy this week and seems to be looking forward to it.

    Last edited by Administrator; 08-24-2014 at 10:58 PM.

     
    Old 08-09-2014, 10:39 PM   #8
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    Re: Mother with MS - Needing Advice

    chbue070780,

    Before starting any herbal program, please consult with her doctor. There are many herbs which are promoted for "cures" and "fixes", but can have toxic side effects and the purity and dosages are not regulated..
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    Old 08-09-2014, 10:42 PM   #9
    chbue070780
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    Re: Mother with MS - Needing Advice

    She spoke to her doctor last week and he gave her the green light to try it, thank you though.

     
    Old 08-10-2014, 11:48 AM   #10
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    Re: Mother with MS - Needing Advice

    From personal experience I cannot offer much because I was just diagnosed in July. However, I have seen some good reports on LDN as well as some interesting regimines that have helped others.

    I've also heard of a lot of references to an OMS Program for a regimen that may help some become drug free.

    One regimen that I recall included the following:
    LDN, Alpha Lipoic Acid and Malic Acid. 300mg ALA at each meal along with 600mg Malic Acid. (LDN is usually taken in 3.5mg via special pharmacy)

    Just something to help see that many take a med-free approach or use supplements. Hope things are getting better for her.

    Last edited by WithGrace; 08-10-2014 at 01:35 PM.

     
    Old 08-10-2014, 12:30 PM   #11
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    Re: Mother with MS - Needing Advice

    CHBue,
    I am on LDN- and if you are interested in hearing more about it- its a non FDA alternative to the other MS drugs; which is approved in Europe, but not the USA...
    Do some research on it, or shout out- there is a pharmacy in BocaRaton Florida which specializes in info on LDN and ships in everywhere. The actual full dosage is 4.5 mgs, taken once a day in a pill form. This might be the alternative that helps your mom..
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    Old 08-11-2014, 05:14 AM   #12
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    Re: Mother with MS - Needing Advice

    That's excellent. I'm glad to see someone here knows about LDN. In my opinion it's a great alternative.

     
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