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What are the Do's and Don't's for when you have M.S?
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What are the Do's and Don't's for when you have M.S?

Hello, I know someone who has MS and he has it spreading up to his thighs now and I'm getting worried for him.  He's around his 50's and I don't know what to do for advice for him.  He makes his own home made vegetable juice every morning which he drinks all the time, but I don't know if that is good enough?

I know that he gets tired easily, but he tries to be very active still so he is very skinny, and fit.  Hopefully I can get some advice from you people :) I don't think there is any cure for MS yet is there?
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560501_tn?1383616340

  Hello and Welcome to the Forum :0
You are very thoughtful to post for the concerns of another!

    Let me ask you, is your friend on any Meds for his MS?  One particular one would be when he gives himself injections?  Is he taking by mouth any medications?

    Or are you saying that he is treating himself w/ eating proper, vitamins, herbs, and whatever else?  Now when you say that it is spreading up to his thighs,...What do you mean?? Is he able to walk, or he is just getting weaker, or a numbeness / tingling in the thighs?

    Sorry for so many questions, but we could get a better / clearer picture of what you are asking and his symptoms...I'll check back to see when you post again on some of these questions...


Until Then,
~Tonya
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Avatar_m_tn
Hi thanks :)

He isn't on any medication as far as I know, he does eat a lot of healthy natural fruits and vegetables.  What  I meant by that it is spreading up to his thigh is that it started from his feet and spread.  So now he's still able to walk and he's still very active etc.  He does get tired easily though, so after 5-6 hrs of standing and walking all the time, he does get tired and he sleeps for a few hrs comes back down for food and then does some more house work he needs to do and then he goes to sleep at around 9-10 because he wakes up early for work.  He doesn't do any heavy lifting anymore, he does more massage therapy.
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667078_tn?1316004535
Hello Derek,
   It would depend on what kind of MS your friend has. He could be like me and have Primary Progressive. Mine was so gradual I did not know I had a problem. I was diagnosed in my 40's but in my case had the disease longer. I do not take medication for MS. Primary Progressive often affects the legs. First you notice you can't walk or run as fast. Then walking distances is more tiring. The most common type of MS is Relapsing Remitting with that you take injections.

MS is neurological. Being active is good. A person with MS only has so much energy in a day like money in a bank. When it is spent it is spent. Eating well is always good. I also love my garden and eating fresh.

You could call the  National MS Society and they could send you specific information on MS. It is pretty complicated at first.

There is no cure for MS but there are medications to slow the Progression for Relapsing Remitting and there are lots of medications for symptoms. Each person with MS has different symptoms according to which nerves are damaged. this is not a one size fits all disease.

Alex
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Avatar_m_tn
Thanks for telling me some more information on MS :) I usually think those medications are synthetic drugs so I always told him that you're taking a big risk if your doing that.  Since they aren't natural, they can do some damage to your body over time.  So I always recommend for him to eat steamed or raw salmon as much as possible.  Other than that, lots of rice with different types of meats and vegetables.  And then I will usually get some fruits for him and then he will cut them himself.  He really doesn't like to get tired out because he likes to be active, and hates sleeping too more than twice a day too.

I got him some epsom salts and asked him to soak in it for 1 hr in hot hot water and put like 4 cups of it in the tub.  Helps me with my muscle sores and usually gives a good boost to my immune system too.
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987762_tn?1331031553
DO NOT GET HIM INTO A HOT TUB!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hot baths, hot tubs, are dangerous for people with MS, they can produce a pseudoexacerbation (temporary worsening of pre existing symptoms) or cause permanent damage.

If you really want to help your friend, please please do not offer advice before you know what is the right or wrong thing to do, please!

JJ
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The drugs are actually natural substances the body makes. Copaxone in an amino acid. The others are interefrons which is another substance our bodies make. He is taking a bigger risk if those medications could slow the damage and he does not take them.

It is a personal decision. I personally feel anyone with RRMS who can afford the drugs and does not take them is unwise. Being permanently disabled stinks.

This is not a muscle disease it is nerve damage. It is actually an over reaction of the immune system. The immune system is attacking and eating the central nervous system. Disability is not always gradual sometimes it is sudden and permanent. It only takes damaging a certain nerve and you are in a wheelchair, or have urination problems, bowel problems, or lose your sight. The damage can be permanent.

This is not a mind over matter disease. I eat well, exercise, etc. but I also listen to my MS Specialist very carefully.

Alex



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Avatar_m_tn
Oh alright.  I thought amino acids are acids that are synthetically created :S I guess I'm wrong.  How will we be able to stop the immune system from attacking and eating the central nervous system?  Isn't that kind of bad to have a strong immune system then?
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338416_tn?1260996698
It's not really strong, it's just confused.  Here you're getting into 'we have no idea' territory.  We're not sure why the immune system attacks the myelin.  We're not even sure if that's what's going on.  It's possible that the axons are breaking, causing the myelin to break down, and the immune response is just an attempt by the body to remove the dead cells.

We do know that axons break even before lesion formation.  And that's about all we know.

The best way to stop the immune system is to use a DMD, or as I like to think of them, rodeo clowns.  Rodeo clowns are there to distract the enraged bull from attacking the cowboy on the ground.  The bull runs off, the cowboy gets up and hides behind the gate, and then the rodeo clown gets the **** beaten out of him.
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572651_tn?1333939396
Stopping the immune system from being agressive is the whole point of the DMD's.  The copaxone acts like a decoy - it gets into the system, crosses the blood brain barrier and the immune system turns on it instead of our myelin.

This is a lot of responsibility for a 15 year old.  I hope there are other people also helping your friend.

-Lulu
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198419_tn?1360245956
Hi there,

Sounds like your friend has adjusted to living the MS lifestyle quite well! Eats well to feel well -- rests and knows his 5-6 hr limits, etc.

Many times, it's this part of the disease people w/chronics struggle with.

I feel too that it is a personal decision to take, or not take meds, but after learning all I can about the meds for MS I feel comfortable that they are not harming me. We do produce interferon naturally (3 of the 4 meds are this) and copax is a peptide (non-interferon).

This is the key, and maybe your friend can relate. These meds do not help MS in later phases of the disease. They are most helpful prior to progression.

So, while your friend is doing all he can do to feel well, the disease may be going untreated. When is the last time he had a check up?

Thank you so much for finding us and joining. Hope we can help you at least get to the point of discussion the options w/someone you really care about :)

-Shell
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Avatar_m_tn
Here is a little information from someone living with the disease, als affecting my dad and his brother.  I guess you could say I am an expert..:)  Anyway, I am 40 years old and was diagnosed in 1996.  I am still very active, (coaching soccer, coaching girls softball, healthy marraige, and still holding down a pretty good golf handicap).  In 1996, I lost feeling in my left side, my balance was terrible, and I thought I was having a stroke at age 26.  Once in the hospital, I thought about my family history and was able to diagnose myself.  The doctor came in a little later to confirm my diagnosis.  After recovering, I went 5 years before it ever hit me again.  It was my vision this time and it made me temporarily blind on one side for a couple of weeks.  I have had a few small episodes since then, but nothing a little steriods could not handle.  I do not take any meds, nor do I watch my diet.  I am 5'10" and 160 lbs, so I feel like I am pretty healthy.  My dad and his brother struggle with it everyday and I admire the way they keep going and do everything to not let this terrible disease stop them.  I feel very fortunate to be in the condition I am in and look forward to living life to the fullest for as long as I can.  With all the drugs on the market, and all the do's and don't's out there, I believe that the best thing for battling diseases is all up to the one affected.  It did not bother me when the doctor told me what I had, because I knew that whatever he told me, I would do everything I could to be stronger than the disease.  It may eventially beat me, but it is up against one hell of a fight.  I have watched so many people give up and I just want them to know to never give up.  One day, there will be a cure, and I hope everyone living with MS will be here to see that day.
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Avatar_m_tn
Um... how will that work? Don't we need our immune system to work in order to fight off bacteria that enters our system?
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Avatar_f_tn
Hi there

Don't worry the DMDs don't destroy the immune system, look at Lulu's explanation above.

You sound like a good friend to find out what you can about MS, I learned more from this forum in a few months than I did from doctors over many years. You are in the right place to find out about MS.

Take care
Mand
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572651_tn?1333939396
Jen - you andI  must have been posting at the same time the other day and I am just now seeing your post.    I LOVE this explanation  and want to be sure everyone reading this catches it, too .....

From Jensequitir: "The best way to stop the immune system is to use a DMD, or as I like to think of them, rodeo clowns.  Rodeo clowns are there to distract the enraged bull from attacking the cowboy on the ground.  The bull runs off, the cowboy gets up and hides behind the gate, and then the rodeo clown gets the **** beaten out of him. "

Again, I LOVE THIS ANALOGY!!!!!  Thanks for giving us a clear picture.  It is similar to my neuro's "friendly fire amongst the troops" analogy.

be well, L
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572651_tn?1333939396
Derek,  that is a very good question.  None of the DMD's kill off our immune system - they don't even suppress the immune system.  

There is another MS therapy - Novantron - which does work that way.  It is a drug that has been used for chemotherapy and does suppress the immune system, leaving it open to all sorts of nasty possibilities with infections.

Also, the stem cell therapy that is being studied also does the same - first they suppress the entire immune system, and then rebuild it from scratch.  

Anytime you suppress or eliminate the immune system you are taking a greater risk.  The DMDs have no risk associated with them when it comes to the immune system.

Keep asking your quesitons and we'll keep trying to give you explanations!  You might want to start a new thread it you have new questions.  Often our members won't jump into a thread that is being done back and forth by a bunch of us already! I hope that makes sense.

my best, Lulu
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Avatar_m_tn
Alright :)

oh and is MS kind of like cells mutating? or nothing related? because then won't kemotherapy work?
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338416_tn?1260996698
Thanks!
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572651_tn?1333939396
Derek,
it is not cells mutating,  the scientists think it is our own immune system being over active and turning on our own myelin.  But the cause of MS is still a mystery and being research.

If MS patients go the route of stem cell or novantron (chemo drug) - that does kill off our immune system and then reboots our whole system.  It turns everything off and then slowly turns it back on.

-Lu
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