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Bitter with the sweet ....

by Keone Michaels Sun Feb 18th, 2007 at 12:55:54 PM EST

Did you ever notice that often in life you get the bitter often with the sweet?  Just at the time when I get a small windfall thru the sale of a house, and I decide to travel, my youngest son (34 yrs old) has phoned with the news that he has been diagnosed with Multiple Sclerosis?  

After I was done having a good cry.  I took myself to Google and I looked up the disease to find out what I could about it.  

The first thing I realized was this was the disease that Montel Willams has.  I turns out that there is very little that they know about MS and it reality it turns our to be a cluster of symptoms that have been identified as NOT being such and such.  There are no definitive causes, there is no knowledge of how it is acquired or transmitted, etc etc.  It mimics other similar auto-immune diseases such as Lupus.  What is not known about this disease is monumental.

There are two tests they use to define the disease as MS.  One is the MRI type where an expert MD reviews the MRI to see if it has changed from the last one and if those changes are significant.  The second test involves a Spinal Tap and an analysis of the fluid.  

Now, I have had a saddle block which is a "spinal tap lite" and i didn't recover from that operation for several years really.  A spinal tap is risky and for what?  

There is very little useful medication for this disease.  It all has major side effects.  And from what i can see it all only treats the symptoms.  

Pain management is the only thing they can do?

Does anyone have any specialized or expert knowledge of this disease?  World wide it seems to occur most frequently with people of Finnish descent so perhaps they have treatments?  Is there any alternative treatments in the European pharmacology?  Comments or suggestions.  

I don't like to get this personal, and this is not a pity party, and thanks in advance for any kind words, but I'm looking to build my knowledge so I can help and support my son.  Any direction you folks might give us would be helpful.

I would recommend that you son looks into Yoga. I have to students with MS. One is very disciplined and is now after two years of yoga showing improvement. The other has been able to keep it stable, but does not do it reguarly.

I find the story of Eric Small, who approx. 40 years ago was diagnosed with MS and today is a yoga teacher, very inspiring. I have seen a picture of him with now over 70 doing headstand and his legs in lotus position. It is his story that I often tell to my students - to show them what is possible with yoga. So It must also be said - it can be hard work and needs lots of disciplin.

by Fran on Sun Feb 18th, 2007 at 01:30:55 PM EST
mahalo...that is a good suggestion.

by Keone Michaels on Sun Feb 18th, 2007 at 01:38:22 PM EST
[ Parent ]
I went to the link and read the site.  That is cool.  

My older son has told me for years not entirely tongue in cheek that I should take  yoga lessons to meet a nice lady, advice I never have taken, however after reading about it I can see taking yoga for entirely other reasons might be useful.  

You are a yoga teacher Fran or are they, your students, from another context?


by Keone Michaels on Sun Feb 18th, 2007 at 03:29:19 PM EST
[ Parent ]
Yes, I am a yoga teacher and I can only recommend you to take it up. Even without physical problems it brings many advantages, beyond physical fitness.
by Fran on Mon Feb 19th, 2007 at 02:40:19 PM EST
[ Parent ]
I'm sorry if this duplicates what you've already found, but maybe there are new ones. If you can read of German, I could point you to more.

The World of MS
National MS society

This one, in French links to possible plant treatments.

In the long run, we're all dead. John Maynard Keynes

by Jerome a Paris (etg@eurotrib.com) on Sun Feb 18th, 2007 at 01:50:54 PM EST
I had two years of German but most of it is gone.  Thanks.

by Keone Michaels on Sun Feb 18th, 2007 at 02:43:16 PM EST
[ Parent ]
I had not seen the World of Ms one altho i saw the other.  The world has a good feel to it.

by Keone Michaels on Sun Feb 18th, 2007 at 02:51:49 PM EST
[ Parent ]
Keone, this is rough news, and I'm so sorry that your son and the rest of your family are having to wrestle with this.

My knowledge of MS is certainly not expert or in-depth, but I have seen its effects first-hand.  A dear family friend, who I've known since I was 10, was diagnosed with MS more than 15 years ago.  It tooks over a year to get the diagnosis right after her symptoms first appeared.  She, too, was in her mid-30s when she was diagnosed, and the first episode was a rather extreme one.

After finally getting the proper diagnosis, she went on  a drug called interferon beta-1b (Betaseron) and her MS went into remission.  She has been able to lead a productive, active and happy life.

In addition to the drug treatment, she was also given a list of "triggers" to avoid and lifestyle changes she needed to make.  I don't remember everything that was on the list, but it included getting adequate sleep, avoiding hot climates, avoiding stress, limiting alcohol intake, and I think some dietary improvements (she's from the deep south, lots of fatty and fried foods on the menu till then).

One very important thing is for your son to pay attention to his body; when it tells him there is a problem, he needs to listen.  My friend's first MS episode, which occurred more than a year before her diagnosis, resulted in her being paralyzed from the waist down and on a respirator.  Part of the reason for that was that she did not recognize the symptoms when they occurred, and thus ignored them; she continued to push herself to work through the pain.  She had to learn how not to do that.

But as I said, she has been able to lead a productive, active and happy life.  She finished her college degree as an adult and a mother of three, which would have been a challenge to anyone even without MS.  She has built a successful career in a notoriously difficult and emotionally challenging field.  It's been nearly 20 years since her first symptoms emerged, and today she does not consider herself disabled or terminally ill.  She lives a good life.

This is obviously not to say that what worked for my friend will work for everyone, but you also should not despair, because there are ways to manage this disease.

Good luck to you and your son, and to the rest of your family.

by the stormy present (stormypresent aaaaaaat gmail etc) on Sun Feb 18th, 2007 at 03:34:31 PM EST
by Keone Michaels on Sun Feb 18th, 2007 at 06:11:59 PM EST
[ Parent ]
I just want to confirm what stormy weather has said about people being able to continue to lead active and successful lives for many years past diagnosis, and the need to avoid triggers like those listed above.

I have a dear friend who has had the disease for 10 years, but has only had 2 (relatively minor) exacerbations of the disease in that period of time.  The course of the disease can vary substantially from person to person, but many people have the slower-progressing form of the disease.

I'm not sure where you are located, but here in the US, there are many local support groups for people with the disease, and they also help people make lifestyle changes that help to slow the progression of the disease.

by CabinGirl on Sun Feb 18th, 2007 at 10:01:14 PM EST
[ Parent ]
My son lives in Minnesota and I live in Hawaii.  He was looking forward to returning to Hawaii, as he is a single father finishing a college degree, yet I see one of the triggers might be warm weather.  

I see that there are support groups in Minnesota as well as in the nearby states.


by Keone Michaels on Sun Feb 18th, 2007 at 10:56:52 PM EST
[ Parent ]
Ditto from me on Stormy's info.  I have two friends with the disease.  One of them seems to have had the same experiences as Stormy's friend, except that she still has "attacks" occasionally.  She also receives interferon treatments which seem largely to be successful.  The other friend has not been so lucky but at age 65 she still leads a productive life and is fun to be with.  Her problems seem mostly to be muscle control in her legs.  She has received several forms of treatment with moderate success.

With the continuing advances in medical science, I am hopeful a cure can be found for this disease soon.  I wish your son and yourself the best of everything.  It's not hopeless.

I can swear there ain't no heaven but I pray there ain't no hell. _ Blood Sweat & Tears

by Gringo (stargazing camel at aoldotcom) on Mon Feb 19th, 2007 at 07:19:05 PM EST
[ Parent ]
Keone, I am with you.  I just dont´t know what to say.

Our knowledge has surpassed our wisdom. -Charu Saxena.
by metavision on Sun Feb 18th, 2007 at 04:47:07 PM EST
there is nothing you can do about this illness following western medicine...

They will check the progress of the disease, that's all....

My only hope is that you can find somewhere a very good doctor which knows about everything-thing (and not only the western medicine but certainly included).. I hope you can find someone who knows everything a doctor knows plus everything for alterantive therapies (and no I am not talking about mystic or healing hands or that kind of stuff).

A good combiantion of western, eastern/chinese (probably the Shangai version of the digestive track hardcore), indian and overall strong nathuropaty (no, not only plants but highly concentrated stuff) can certainly slow it down. Homeopathy does not work very well with me (of course I have tried everything.. I am scientist, you know so I do not trust anybody).. but certainly you can give it a try since the "diagnosis" approach (why and how would it slow donw) is something I like it very much, so maybe is the right approach for him.

Unfortuantely, it depends on finding a good personal doctor (somekind of xaman) and the sick person... having a lot of strength, take a tough fight.. and change everything taking care of your own health.

I wish the best for your son.... and hopefully you will find soemone that can really help.

A pleasure

I therefore claim to show, not how men think in myths, but how myths operate in men's minds without their being aware of the fact. Levi-Strauss, Claude

by kcurie on Sun Feb 18th, 2007 at 04:47:52 PM EST
..on some cases interferon is recomended... in this case a good combiantion of therapaies would proabably do the trick and you can have certainly a very good life.

If it is not the case well, it can still be a rather good life...

In any case.. my advice is not trating MS purely with western emdicine.

It is just my advice. But it is form the bttom of my heart.

A pleasure

I therefore claim to show, not how men think in myths, but how myths operate in men's minds without their being aware of the fact. Levi-Strauss, Claude

by kcurie on Sun Feb 18th, 2007 at 04:51:13 PM EST
[ Parent ]
From what I have read, Interferon is a cancer drug that has be adapted for this MS context.  It masks the symptoms successfully, but there is some conjecture as to what it actually accomplishes.

And it has nasty side effects too from what I read.


by Keone Michaels on Sun Feb 18th, 2007 at 07:08:43 PM EST
[ Parent ]
an interesting article about woms recently - forget where I read it.

Basically it said this: we humans have these 'parasite worms* - for instance, tape worms. They live in our digestive system. They don't kill us, but neither do they promote wellbeing.

They are able to exist inside us, without being expelled, because they have some magic talent to suppress our auto-immune system.

MS - as I understand the literature - MS is an auto-immune system disease. The body starts to attack itself. The worms might give us a clue to how that works, since they exploit it.

No answers - just a direction to point in....

You can't be me, I'm taken

by Sven Triloqvist on Sun Feb 18th, 2007 at 05:52:36 PM EST
The worms suppress our immune system.

Auto-immune diseases include allergies.

"It's the statue, man, The Statue."

by Migeru (migeru at eurotrib dot com) on Sun Feb 18th, 2007 at 05:58:13 PM EST
[ Parent ]
My apologies - I had assumed that all D-Day 'invasions' were immune system  related, and that guerilla warfare was auto-immune system related.

It is pertinent to today: what is the difference between people who wear uniforms or not? The 'War on Terra' is about uniforms.

It is the core concept of our age: Do the differences between "what you say and what you do" and the nature of UNIFORM (A visual decalration of the above)  have any relevance?

Tsiisus; military thinking is so primitive...

You can't be me, I'm taken

by Sven Triloqvist on Sun Feb 18th, 2007 at 06:14:06 PM EST
[ Parent ]
Proper immune response involves recognising and neutralising foreign objects. Auto-immune just means that the immune system wrongly categorises some of the body's own tissue as foreign. Transplant rejection is a proper immune reaction that we try to suppress because we want the new tissue to be accepted. Same thing with rejection of blood transfusions of the wrong type. There is this think called the MHC (Major Histocompatibility Complex) that the body uses to recognise foreign tissue. Allergies and MS are auto-immune. Treatments that are effective against allergies or transplant rejection could be tried on MS patients, but there's no guarantee that they would work.

"It's the statue, man, The Statue."
by Migeru (migeru at eurotrib dot com) on Sun Feb 18th, 2007 at 06:58:37 PM EST
[ Parent ]
I was passing by... And jumped in to tell that my thoughts are with you and your son!
Mine has another auto-immune problem, Type I diabetes... Because is it a well studied disease from a long time, treatments improves years after years... Research is well funded because there's a lot of patients...

Still, the latest breakthroughs are of a more generic sort, understanding more the auto-immune triggerings (from cancer cells to Langerhans islets)... So, in a short future there should be good news for the other diseases too...
But the Migeru could explain it better then me!

"What can I do, What can I write, Against the fall of Night". A.E. Housman

by margouillat (hemidactylus(dot)frenatus(at)wanadoo(dot)fr) on Sun Feb 18th, 2007 at 08:04:39 PM EST
my sympathies, keone.

once i was in tahoe, ca and i met a therapist who was given medical marijuana for the pain of ms.

it worked really well for her, so she could even ski.

best wishes for your research, and quality of life for both of you.

'The history of public debt is full of irony. It rarely follows our ideas of order and justice.' Thomas Piketty

by melo (melometa4(at)gmail.com) on Sun Feb 18th, 2007 at 11:26:46 PM EST
Montel swears by it too ....

by Keone Michaels on Mon Feb 19th, 2007 at 09:45:08 AM EST
[ Parent ]
Although the medical world feels the evidence is mixed, there is a growing acceptance amongst sufferers that marijuana will suppress both symptoms and progress of the disease.



keep to the Fen Causeway

by Helen (lareinagal at yahoo dot co dot uk) on Mon Feb 19th, 2007 at 04:00:22 PM EST
I'm sorry to hear about this, Keone, it must have been (be) really rough news.

I don't have any experience of MS, but I'd side with those who suggest - whatever treatment may be offered by Western medicine and accepted and followed - that diet  and the combination of exercise and mental concentration found in Yoga (for example) will also be extremely important.

Forgive me for not stopping by this thread sooner. I could say I was busy, but I was ducking out. After reading your pleasure at the European trip, this was icy. Hope things look up a little soon.

by afew (afew(a in a circle)eurotrib_dot_com) on Tue Feb 20th, 2007 at 01:47:01 PM EST

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