Multiple sclerosis... M.S. what it is, and how we deal with it

M.S. is a maddening disease.

I have M.S.

I was diagnosed 5 years ago with the "relapsing-remitting" form of the disease. I am currently in "relapse", and have been for almost 3 years. My doctors fear that my M.S. has moved on to the "progressive" stage; I still hope for another remission. Fingers crossed...

For those that do not understand M.S.; it is like this. The immune system attacks the myelin sheath around nerve bundles, and it essentially shorts out vital nerves. M.S. most frequently attacks the optic nerve (I have severe vision issues on my bad days) and peripheral nerves in my hands, feet etc.

M.S. is like having a bad flu, every day of the year. Body aches. Lethargy. It sucks.

"Western" meds for M.S. (beta-interferon) is as bad, or worse, than chemotherapy. I know. Been there. Horrible experience.

The meds I use now are quite controversial (you can PM me to ask, and I will be totally up front with what works for me), but M.S. presents itself differently for each and every victim.

My key is "nesting"... I know when the bad days are coming, and I "nest". I build a pillow fortress on my sofa, designed for my comfort... my wife knows that when I "nest", it is my M.S.

It sounds childish, but, with M.S. comfort can mean everything.

If you have experience with M.S., or can recommend helpful therapies... I am all ears...

Wow...I am very sorry to hear this.

M.S. is a terrible affliction/disease. I don't know a lot about it, but I had a friend who had it (he's since passed).

I wish you the best, and God Bless you!!

originally posted by: Flyingclaydisk
Wow...I am very sorry to hear this.

M.S. is a terrible affliction/disease. I don't know a lot about it, but I had a friend who had it (he's since passed).

I wish you the best, and God Bless you!!

It could be far worse... at least I am not a liberal

I've had 2 friends with it, living with it for years. Good days and bad days, the thing that amazing is how they face MS head on, No sympathy wanted.


God bless you and stay strong!

PS thank God your not a liberal is right!!

originally posted by: WUNK22
I've had 2 friends with it, living with it for years. Good days and bad days, the thing that amazing is how they face MS head on, No sympathy wanted.


God bless you and stay strong!

PS thank God your not a liberal is right!!

"Good days and bad days" describes the disease quite exactly...

MS sucks. I knew a couple of people who had it. One is dead and the other one is getting worse. I know some people who are supposed to have it, diagnosed by the doctors, but they changed their diet and they are not progressing much at all if any. They did not get much better, but they seem somewhat better than they were. I never asked them what they did, but a few doctors told them what would help and they did that and learned more through research. It was all diet, I don't think it was any supplements except maybe a multivitamin or something like that. They may be taking something more, I really have not asked them what they have changed.

I eat a lot of bone soups, made with different kinds of meat. Chicken and beef, and of course ham bones.

They work great for me and seem to be very anti-inflamatory, but I don't know for sure if they would treat MS. By what I have read it seems to me they should, especially cartilaginous beef soup bone soup. There are quite a few articles out there that say bone broth helps with MS, but I cannot say for sure it does. I do not have MS so I can't test if it works and I am sure the Pharma companies are not going to test if bone broth stops MS

The Myelin sheath is made of a higher concentration of the elastin binding protein, a protein only made by certain microbes. no animal can make it and no plant can make it. You will find this protein in people's muscles, it gives elasticity to the muscles and also in the skin. Now, altering the diet of the cows changes their rumen flora and these microbes do not live there, so the cows meat is more tender.

I wonder if this elastin binding protein can actually trigger the response if the immune system goes amuck. So just consuming some of this protein might give the immune system something to fight instead of eating the myelin sheath. Jello has a lot of this present in it too. I like Jello.

Now, the heart and intestines also use this protein, if there is a deficiency, they will rob it from areas of high concentration, the skin will get less elastic and it could take it from the Myelin sheath, to accomplish this it would have to utilize the immune system. It would appear as if our immune system would be messing up. Also, it would be robbing the protein from the muscles to keep the heart and circulatory system going.

These are some possible ideas of what may be going on. I have no way of researching it this is possibly happening.

I am sorry for what you must be going through and the challenges you have. I'm glad that you made this thread so you can get support from your ATS family.

One of my Grandfathers had this or another similar disease. He died before I was even born which was 59 years ago, so I don't know too much about it first hand. I hope others can share whatever they know with you.

This thread could be therapeutic for you. Some people aren't into prayers, but I shall pray anyway and send positive vibes and all. HUGS!

I retired from the USAF in 2011. I am 5'11", and when I retired I was 195 lbs. None of that was fat. I was a pretty big dude.

Now, I weigh 150lbs on a good day. I struggle, every day... and it sucks.

BUT... we have livestock. Goats, ducks and chickens... even on my worst day, they rely on me. That keeps me going...

Question OP - have you ever had a traumatic neck injury?

a reply to: madmac5150

A few years ago, there was research being conducted concerning local endocrine changes that would trigger myelination of dendritic outgrowths of oligodendrocytes in the CNS.

Don't know if it ever went anywhere, but I thought I'd mention it if you were unaware.

Take care.

originally posted by: kosmicjack
Question OP - have you ever had a traumatic neck injury?

Only Basic Training involved whiplash

No. I do have damage to my lumbar spine; the M.S. was diagnosed after MRIs detected demyelinating lesions on my spinal cord and my brain.

Probably explains why I still watch "Beavis and Butthead"

a reply to: madmac5150

Could be related. There's a doc with a theory on MS and blood flow issues from spinal/neck issues.
I'll have to find the article.

Look into turmeric.

www.ncbi.nlm.nih.gov...

Not as many papers as I was expecting, but neuroprotection is one of its well known properties.

Google Dr. Zamboni and also Dr. Wahls.

originally posted by: stonerwilliam
PART OF POST REMOVED BY STAFF

You are one of the funniest posters on this site Take it easy and keep your chin up

22 MRI's
4 spinal taps
4 nerve conduction studies (Needle EMGs... very painful)
Countless X-rays
7 days, hospitalized in the ICU with a drug allergy (almost killed me)
Prescription meds that made me worse off than the MS

That is the reality of MS. The meds will kill you far faster than the disease will....

originally posted by: madmac5150

originally posted by: stonerwilliam
a reply to: madmac5150

Dear Madmac

Why did G-D let all these weeds grow and when you are nesting do you twitter like a bird

comfort can mean everything !!! Amen to that .

What really sucks, is that I cannot talk about what helps me now... (T&C) but, I can tell you about what has been done to me in the past, in the name of "science" ...



You are one of the funniest posters on this site Take it easy and keep your chin up

22 MRI's
4 spinal taps
4 nerve conduction studies (Needle EMGs... very painful)
Countless X-rays
7 days, hospitalized in the ICU with a drug allergy (almost killed me)
Prescription meds that made me worse off than the MS

That is the reality of MS. The meds will kill you far faster than the disease will....

I do treat my MS holistically, now. The journey has been brutal, but, I have found relief. It is what it is.

I no longer walk with a cane, and I have the energy to get out, and care for my livestock.

I can do this, because of what I use now.

a reply to: madmac5150

I'm glad that you have at least found some relief and are able to care for your livestock. Do you have any pics of your animals?

I wrote a thread, years ago about my stupid cat. My cat has made my MS far more bearable.

www.abovetopsecret.com...

That stupid little cat, is still my best buddy... on my bad days, he curls up with me and refuses to leave my side.

My good days?? He hits me up for catnip... LOL

a reply to: madmac5150


Bahahahaha! I almost spit my water out! That was hysterical! Talk about laugh out loud! I did! OMG, you sure can write! Thanks for that link, I needed a good laugh!


I'm still laughing!