FAQ • Multiple Sclerosis, Chronic Progressive

FAQ - Multiple Sclerosis, Chronic Progressive
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How long does she have? Living with progressive multiple sclerosis?

My Aunt was diagnosed with MS over 20 years ago. In the past 7 years she has gotted really bad, she basically has every symptom of progressive MS. It's so hard to see her like this at the age of 57. The medication she is on doesn't really help her. She has no blatter control, can barely walk, very moody, cant remember things or keep a conversation going and can barely walk. So I wonder, how long she may have until we have to put her in a nursing home or worse death.

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All I can tell you is she cannot die from M.S. (+ info)

What can reasonably be done for Primary Progressive Multiple Sclerosis?

I have pp MS and doctors have done little for me but treat some symptoms. I have known about it 9 years and am doing better than expected and going down very slowly, but still going down. Is there any way to turn this around?

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My mother has ppMS and has experienced the same treatment as you. Unfortunately treating your symptoms is all that can be done, especially as you have had this for 9 years. There is a lot of research into new drugs for MS but not for the progressive types only the relapsing remitting types. My mother had a few steroid courses which showed an improvement for a short term period, but I would be very cautious about steroid treatment as they come with serious side effects such as hypertnesion and osteoporosis .
I am very pleased that you are doing better than expected, and I hope you continue to do so. I'm sorry I can't offer any more help or ideas about it - I'm sure your neurologist is doing the best he can. (+ info)

my dad has primary progressive multiple sclerosis we live in pa. as you know medical marijuana is illegal?

Are we able to go to a different state and go to a doctor who could write a prescription for med. marijuana? and still be able to come back into pennsylvania with it?

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It wouldn't matter if you live in PA, and got a prescription from a doctor in California for medical marijuana, then you bought your medical marijuana in California. Once you get back to PA, you are now committing a crime by possession.

http://www.norml.org (just for reference for you about states and their medical marijuana law status)

However, your father still might be in luck! :)

There is a drug called Marinol that is a pharmaceutical grade form of THC (stuff in pot that gets you high) Depending on your doctor, you might be able to get him/her to prescribe your father Marinol so he'll be able to get some relief.

http://www.rxlist.com/marinol-drug.htm

Good Luck to your and your father.

God Bless. (+ info)

How long does she have...Living with progressive multiple sclerosis?

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No one can pin point the exact t ime of death for anyone. But I would say that your aunt is depressed. Think about it she should be inthe prime of her life enjoying herself and she has zero control. Unfortunately MS is a progressive disease without cure. Just be there for her. Make sure that she has someone to take care of her at home. You DO NOT want her to go to a nursing home where she will get substandard care. PLus that will depress her more. Losing her home will be devastating. Make sure that is she is bed ridden that she gets turned every hour and if she is in a wheel chair make sure that she lies down to relieve the pressure on her cocyx. You do not want her getting sores otherwise she will have to go to a home. If she doesnt have a catheter think about her getting one It would reduce the risk of urine burns to her thighs, buttox, and vagina. Imagine if your freedom was taken this is what it is like for her loss of control. It is sad but she needs a strong network of family and friends with whom she can talk to. (+ info)

What distinguishes Multiple Sclerosis (especially secondary progressive) from Motor Neuron Disease?

Multiple sclerosis is diagnosed by the lesions on the spinal cord. Motor neuron is characterised by degeneration of the spinal cord (+ info)

Multiple sclerosis?

I am 39 and 2 weeks ago I was diagnosed a disease Multiple sclerosis. At that moment my world collapsed because I am a teacher.I've been told that it is not progressive. Any advice how should behave in the future?

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I was diagnosed with Relapsing and Remitting MS 18 months ago. In retrospect, I have had this for at least 20 years. Of course I had symptoms and exacerbations that I simply ignored (fatigue, numb hands & feet, was falling all the time, had vertigo, double vision, cognitive issues, constipation and bladder urgency) until I had a really horrific exacerbation where I had optic neuritis for 3 full months. My doctors (opthamologist and PCP) had been urging me for many years to see a neurologist but I was in SERIOUS denial. Ok, I am a busy mom, and business professional, I didn't have time to be sick! I guess I figured if I ignored it, it would go away. Wow, was I ever wrong. Of course I could no longer deny my illness when those bright spots/ lesions appeared on my MRI. I truly felt like I was dying.

I saw 3 different neurologists all who recommended I go on a medication that required daily injections. I was NOT willing to commit to that and decided to embark on fixing myself through diet, exercise and supplements. (Some of my keys to success are avoiding gluten, sugar, refined flours, I take natural vitamins from a health food store, not those nasty synthetic vitamins, I walk daily and do Yoga which is great for helping with spasticity.) I follow The Swank Diet, which has been in existence since the 1950's successfully offering an option for people with MS. http://www.swankmsdiet.com/

Today I feel better than I have in 20 years. People cannot believe how good I look and I feel even better.

I urge you to read as much as you can. There are many books on the market, there are great groups here on Yahoo with very knowledgable people, search the internet for other options. One great book I read recently was Montel Williams book "Living Well". Montel has MS and he is an inspiration to all of us with this stupid disease! http://search.barnesandnoble.com/Living-Well/Montel-Williams/e/9780451222930/?itm=1
Although you can't cure yourself, you can definately and dramatically improve your health. Just remember you are what you eat.

I also urge you to read all you can on Naltrexone. Given in low dosage form, the results have been very positive.
http://www.lowdosenaltrexone.org/
Naltrexone is a FDA approved medication and very inexpensive however your neurologist will not tell you about it. I got my prescription from my family doctor....my PCP.

Now the decision is yours, do you completely depend on western medicine? Do you go completely holistic with diet, supplements and such? Do you use a combination of them all? What ever you do, remember that MS is individual to each person but what ever you do, I know as an educator you will definately educate yourself on your options and make an informed decision in which route to take.

If you would like to talk about this and my approach, email me here.

Oh, and I'm no victim. I am alive and kickin and feisty as ever! I will NOT go softly into the night and you don't have to either! Please note, I do not claim to be cured, I'm NOT. However, I am remarkably better and better than my friends that inject themselves with the pharmaceutical cocktail.

Whether you think you can, or you think you can't.........you're right! You can overcome this! It's not easy but it's better than being a victim! (+ info)

where can i find a chart or any charts, or diagrams on the progressive disability stages of multiple sclerosis

i need pictures showing the different stages of disability of multiple sclerosis, so that i can print them out

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Try here:

http://www.emedicine.com/pmr/topic82.htm

Article describes different levels of MS disability- you can make your own chart from it. (+ info)

Is multiple sclerosis considered a chronic disease or a terminal disease?

It can be both. It is a chronic, progressive and irreversible condition. It is managed by treating the symptoms and by patient education (example: balance activity with rest) to prolong as normal and active a lifestyle as possible for as long as possible. Although a minority of people die indirectly from MS, most live full, productive lives. (+ info)

Can Multiple Sclerosis cause chronic pain in the head?

MS can potentially cause just about any neurological effect you can think of, including head pain. Because the potential effects of MS are extremely variable and include a wide range of possible symptoms, head pain is not a symptom that indicates someone has MS. (+ info)

Have u or any1 u know ever had relapsing-remitting Multiple Sclerosis that turned into progressive MS?

Patients beginning with RR-MS can then enter a phase where relapses are rare but more disability accumulates, and are said to have the Secondary-Progressive (SP) type of multiple sclerosis. About 50% of RR-MS patients will develop SP-MS within 10 years.

Here's a easy to understand article http://www.medicinenet.com/multiple_sclerosis/article.htm
I also like the "MS for Dummies" book. For me MS was the devil I knew since my mom and aunt have it. But the book was a good reference for my husband. Plus there were tips I hadn't heard of or thought about.

My mom, aunt and I all have RR-MS. (+ info)

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