I was curious if any members here are dealing with the disease. We were given quite a shock when my daughter was diagnosed/treated this week with it. We are looking into m.s. clinics now and was wondering what outcomes have you noticed with different treatments. I have been researching it a lot,( I know that can be dangerous {psychologically} as a little info. can be taken in so many ways), but as this is new to us, I was curious if anyone here is dealing with it and your outcome(s). Thanks in advance.

I don't have an answer for you. One of my good friend's wife was diagnosed with it this week. She is in her early 30s and it is tough to deal with, no doubt.

My wife's mother died from it- she was in her thirties at the time.
No fun disease, that is for sure.

My sister was diagnosed with it about 15 years ago, she’s 46. She gets treatments every Tuesday. She has a few symptoms that nagged her once in a while like blurred vision and headaches, she works forty hours a week but she naps often when she’s home. She’s works out quite a bit and eats a healthy diet. My email is in my profile if you want to send me a list of questions to ask her I’ll get back with you ASAP.

I saw this article a few months ago. See if her physician knows of it.

“Patients with advanced multiple sclerosis are set to benefit from the first treatment proven to slow the course of the disease.

A major study has shown a daily siponimod tablet slows the advance of symptoms of secondary progressive MS by a fifth.

While there are many treatments for MS in its earlier stages, once it has reached the latter phase – usually after 15 or 20 years – there is nothing doctors can do for their patients…”

www.dailymail.co.uk/health/art...it-daily-tablet.html

My wife has MS; feel free to e-mail me.

aileron

Sorry to hear that.Here are a few links that have information on Vitamin D3 and MS. Clinical trials are underway,it may help slow progression.

https://www.mayoclinic.org/dis...-and-ms/faq-20058258

https://www.nationalmssociety....s-Progress/Vitamin-D

https://www.nih.gov/news-event...clerosis-progression

http://www.lifeextension.com/p...le-sclerosis/Page-01

Thanks for the replies. I sent a few emails to a few of you. My dau. is in her mid-late teens and it is difficult to find specialists that will be able to carry over when she is 18 in a few months. We are looking into a MS clinic as well but they are a few hours away from us in almost every direction. I have worked in ems most of my life and have seen some heart breaking things and it is especially sad seeing young kids having to deal with bad things/diseases. While at the hospital my dau. had to be placed in the Oncology pediatric side due to her age. It is quite humbling seeing some of the kids there going through what they are going through. I try to keep her strong in our faith and will keep you guys/families in prayer as well. Thanks for all the good thoughts and prayers.

This is an excellent resource:

https://secure.nationalmssocie...s_children_and_teens

I think your best resource in FL is Mayo Clinic in Jacksonville.

My sister has it. And a woman at work has it. I feel rather close to those who have it as it is an autoimmune disease similar in many ways to Rheumatoid Arthritis which, I personally live with.

I have a patient that has it. Every year he improves slightly. Appears to be caused by a bacterial infection, and much of the damage may be due to an auto immune action.
This is what has worked for him:
No sugar, low carb diet.
Use of some alternative health care devices to boost the immune system
Stay cool, do not get hot.

What does not work: Most MS persons are of the opinion that the anti-MS drugs give short term relief, but accelerate the course of the disease in the long term. Most likely the drugs reduce the effectiveness of the immune system, which slows the auto-immune attack. However the infection that is the underline problem is now more able to multiply and spread.

Diet (instead of drugs) show benefits. Most times, drugs only treat symptoms and do not approach causation.

Influence of Diet in Multiple Sclerosis: A Systematic Review. 5-15-2017

A Diet Mimicking Fasting Promotes Regeneration and Reduces Autoimmunity and Multiple Sclerosis Symptoms 5-26-2016

Nutrition Facts in Multiple Sclerosis 2-18-2015

^ not even a handful of results that may be of interest - there are pages to sift through:

site:https://www.ncbi.nlm.nih.gov/ multiple sclerosis diet

We were working with the neurology Dept at UCSF, but our Dr left to set up a MS dept at Tulane. Nothing great for MS in Montana, so we have to get on a plane a couple of times a year to go somewhere, might as well be New Orleans. Dr Elizabeth Crabtree is a MS rockstar.

Lots of types of MS; aka wife's is relapsing-remitting aka RRMS. One thing universal: heat is a problem for MS patients, just another good reason for us to leave SoCal

We are going to try different things over time to see what works best and I appreciate all of the articles. It kills me as a father not being able to do anything for my little girl.

Before I retired, one of my employees had it for over 20 years. She needed a stable shift, good nutrition, moderate exercise, and medication. She had 4 kids and couldn't afford the meds, so I put her in touch with the manufacturer (big pharma, yes) who discounted her by over 90 percent. She had to call in sick maybe 5 times a year, usually after having to work a double shift. The sleep pattern thing was very important in her case.

quote:

Originally posted by patw:
It kills me as a father not being able to do anything for my little girl.

I know exactly how you feel.

My daughter was diagnosed when she was in her early 20s. Now in her early 30s with two wonderful children. We have a lady in our bible study with MS that (that has two grown children) that has been a wonderful resource for my daughter. I'm sure either or both of these women would serve as a resource for your daughter (if she doesn't find one closer to home). My email is in my profile.

A good friend of ours was diagnosed with a rare form of MS. It was hard to watch him decline. However, he was put into a program at Mayo and what a difference it has made. He went from struggling to walk at all to using a special lower leg brace and a hiking stick. I’d be happy to get more info - email in my profile.

Wishing you and your daughter nothing but the best!!!

also, read up on studies looking at ketogenic diets and multiple sclerosis (search link below). many chronic diseases of today are called western diseases, because they started to appear with the advent of agriculture. there are still older cultures who don't eat the SAD diet (standard American diet) and DON'T get cancer, diabetes, obesity, fatty liver disease, MS, etc., etc., etc. All of the chronic diseases mentioned are relatively new to our culture, meaning they have recently skyrocketed.

you have to ask the question: who benefits from only treating symptoms, and not curing these diseases?

https://www.bing.com/search?q=...4D0691E008E6AD5C7229

A good buddy here had it and it was starting to progress fast. He got into a study in Chicago where they basically emptied his immune system and fed it back to him. It stopped the progression and has saved his life. He did some p.t. for awhile and still goes to the gym now. He hasn't been able to regain all of the strength he lost in his one leg but he's a tough S.O.B. and continues to fish, dive, hunt, and work his cattle ranch.