My mother has progressive MS

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My mother has progressive MS

Postby CassandraM » Fri Oct 30, 2009 2:52 pm

She was just diagnosed yesterday. She has been sick for many years and none of the doctors even suspected MS. 2 years ago she lost the ability to walk, she can barely move her legs now and needs help to sit up or roll over, she is currently residing in a hospital bed in the living room of my grandmothers house, they live 2 houses away from me so I go to see her often. Hopefully we will be able to afford a physical therapist who can help her get her strength back in her legs...But I have doubts that she will ever be able to walk again, my grandmother said it would be a miracle. My mother is losing weight fast, she used to be 250 and now she is about 190-180, she hardly eats at all...She is also bi-polar if that makes any difference and she has migraines and used to have seizures, in fact when they did an MRI they found that she has had over 100 unnoticeable seizures by looking at the marks on her brain.

I would love any bit of advice I can get from here. What can I do to help my mother get better? Is it even possible at this point? Are there any good books out there that you can recommend? What are good exercises that she can do when she can barely even move?

This is my mom when she was still able to get into a wheelchair
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And this is us together
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And this is the most recent...Taken about a week ago, sorry for the mess, it's cleaned up now
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Thank you so much for your time :) I greatly appreciate it!
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Postby Loobie » Fri Oct 30, 2009 4:27 pm

Welcome Cassandra,

I hate to hear of your mom's story and it seems like you love her very much. If you want to know the truth, that is the most powerful thing that you can give to her; your unwavering love and companionship. That is something that all of us need and are always scared that people in our lives will go away. I love the pic of you both smiling for the camera, it's a classic. A number of us are trying a new type of treatment that is a big departure from 'conventional wisdom' that has to do with blood flow in the brain. It's called CCSVI and if you scroll down to the bottom of the page, you can read about it. How much could it help your mom? The book is still out on that one. I've had the surgery and I still have my ups and downs because I'm secondary progressive right now, so even if 'this is it' it will still take some significant time before we know how much it will help people with significant disability.

You ask some questions that are difficult to answer. She is obviously not moving very well and thus exercise would be difficult, but believe it or not, even a little bit helps in terms of trying to get rid of and stave off atrophy. Just moving and stretching if she's able. It hurts, but it also helps. Also, since she is eating so little, make sure what she does eat is good for her. You know, lean meats and lots of fruits and veg. I'm in kind of a weird spot today and when I saw that picture of you and her just cheesing like that I must confess I broke down. Just keep that smile on your face every time you see her, and spend some time poking around on here. There are many different routes people on this site have chosen to go and some of them have worked for some and not for others. That's the thing about this disease; you just never know.

So spend some time looking at what people are doing. I'm obviously in the CCSVI camp since I've had the surgery and have a horse in the race if you will. Once again welcome and keep your chin up as best you can.
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Postby cheerleader » Fri Oct 30, 2009 4:42 pm

Hey Cassandra-
Just read your post....and Lew's right, the love you're giving your Mom is the best medicine. It's so hard to see someone we love hurting, and I understand that. I also loved seeing the animals near your Mom. Our dog always gives extra snuggles to my husband if he's had a rough day. Animals know how to love.

Does your Mom have a regular doc or an MS doctor that she's seeing? Let us know. All of Lew's advice was right on about diet and moving. I have some research for you to give to your Mom's doctors if you want, and it might make sense to them with her other neurological issues - like being bipolar...but check out some more info on the site and keep us posted.
You're a good daughter, and I'm sure your Mom is really proud of you-
hang in there,
cheerleader
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CassandraM » Fri Oct 30, 2009 4:57 pm

Thanks for all of the advice thus far, I will definitely look into the stuff you suggested, I forgot to mention in my post that she CANNOT have any kind of surgery, not even a lumbar puncture because she has extremely thin blood and is on Kumadin (spelling?). She can bleed for hours from a tiny paper cut...I don't know if that is helpful but I thought I might mention it. I am doing alot of research on MS and I found some books on amazon that my grandmother is going to buy.
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Postby Loobie » Fri Oct 30, 2009 6:08 pm

All of us that have had the CCSVI surgery are on Coumadin also. I had to have it two times (I was a teaching moment!) and the second time he did the surgery, I had been on Coumadin for about 8 weeks. Not sure what her thinning level is supposed to be, but they still did it to me on that stuff. Now it's pretty premature to just look at that. That's what a lot of us have chosen and it shows promise, but just start reading and see what you think about all of it! Good luck Cass.
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Postby lyndacarol » Fri Oct 30, 2009 6:48 pm

Welcome CassandraM-- Your first post asked for advice, book suggestions, etc.

In brief, here is the action plan I suggest to you:

First, take a deep breath. You will find many different ideas at this website--as a group, I think we agree on a few basic steps.

Second, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is the good second book to read or even have. You may be able to get these through your local library.

Third, if your mother has a future MRI, ask that the radiologist make a special note of the sinuses. Many with MS report sinus problems (including myself). Ask for a copy of all her test results for her or your own file.

Fourth, from this day forward, encourage her to eat a healthy diet. Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from her diet. Personally, I think that excess insulin plays a great part in MS.

We commend you for your desire to help your mother! Some of my ideas may be different from those generally accepted, but I think it IS possible for your mother (and all of us, for that matter) to get much better. There are too many stories of people who GREATLY improve -- why shouldn't it happen to us too? You can find one such story in the book, The Gold Coast Cure by Andrew Larson, MD and Ivy Larson.
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Postby Wonderfulworld » Sat Oct 31, 2009 4:33 am

Hi Cassandra
you sound like such a good daughter.
Your Mum, and you, have a lot to deal with.

I would love any bit of advice I can get from here. What can I do to help my mother get better? Is it even possible at this point? Are there any good books out there that you can recommend? What are good exercises that she can do when she can barely even move?

Definitely exercises/physiotherapy will help her. It won't fix existing problems but I'd guess that a lot of your Mum's weakness is being made worse by lack of movement and physio. I was in an MS-yoga group and even those who were in wheelchairs were able to benefit from modified exercises. Hydrotherapy (physio-led exercises in a pool) might be really good - you can achieve a lot more exercising in water and don't need the same kind of mobility as on the ground.

Nearly everyone of us here on ThisIsMs has a "pet" subject. Mine is Vitamin D3 levels. A lot of research has pointed to D3 levels as having an impact on your MS. Getting your D3 levels to an optimal range will not cure MS, but it might help your Mum's MS. Ask her GP to test her D3 levels - a simple blood test - and look at getting supplements for her if she has insufficient levels. Everyone is different but I found I had insufficient levels of D3. Once I got them to normal levels my migraines stopped happening.

Best of luck to you and your Mum.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby CassandraM » Sun Nov 01, 2009 3:09 am

Thank you all so much for the super helpful advice :)

My fiancé and I bought a book today called "The Everything Health Guide To Multiple Sclerosis-Margot Russell with Allen C. Bowling,M.D,Ph.D" and I have been reading it since we got home, I am going to take it over to my grandmothers house tomorrow and let her read it to mom. I also bought my mother a big folder in which she can keep all of her doctor papers and notes.

We will go on from here :)
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Re: My mother has progressive MS

Postby NHE » Sun Nov 01, 2009 4:44 am

Hi Cassandra,
Be sure to take a look through the Reading Nook forum and the thread on Good book for newly diagnosed? may be helpful for you.

NHE
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Postby LR1234 » Sun Nov 01, 2009 5:32 am

HI Cassandra,
I am so sorry to hear about your mum, it must be devasting and frustrating for you to see her go through this.

There are some things that people are trying that seem to help.
1. Best Bet Diet (see Ashton Embry online)
2. Low dose Naltrexone (LDN)
3. Supplements, I am finding Q10, B1 and B3, zinc, a multi vit very helpful. Speak to Jimmy legs (on TIMS) about supps she has studied a lot on this topic!
4. Check out CCSVI and maybe see if you are able to get your mum checked.

L x
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Postby CassandraM » Sun Nov 01, 2009 10:25 pm

Thanks all,

Even though she is "newly diagnosed" the thing is that she has had it for a REALLY long time and they just never looked for it, it's not like she started feeling odd, went to the doctor and then found out she had MS. She has been getting worse over the last 9 years and now she can't even walk. it all started with depression and migraines, self mutilation, heavy smoking...then some seizures and medication, fatigue, thin blood MORE medication then laziness and anger, more medication...Then over a month she lost her walking ability, we all that it was the medications messing her up so badly, at one point she was taking like 30 different pills a day. When she can't tell my grandmother she wants something she starts crying because we can't understand her since she talks so quietly and her words don't really make sense...I need to know what I can do for her now that she is so far into the disease before I lose her altogether...Has anyone else had this particular problem? All these books are for newly diagnosed people and I can't find any for people who are so far into it that they are like my mother...
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Postby LR1234 » Mon Nov 02, 2009 3:42 am

Hi C,
The MS Recovery Diet Ann Sawyer (Author), Judith Bachrach
Look online for Terry Wahls as well, she had progressed a lot.

I would start by trying to help your mum eat as healthy as possible and maybe think about cutting out wheat and dairy for a while to see if that helps her feel better. Make sure she eats loads of fresh (or frozen) green vegetables: Kale, Spinach, broccoli, brussel sprouts and lots of good protein like Fish, chicken, lean meat and her root vegetables. I also find a bowl of porridge in the morning with some rice milk really makes a big difference with my energy for the rest of the day.
Any suggestions we have her to help your mum are going to be something that will take time and effort to stick to, there is (as yet) no quick fix but these suggestions might help her a little.

LDN you might be able to ask her dr for but if she is on lots and lots of other pills they may interact. Has your mum had her liver checked recently? Maybe ask your dr to do that to see if there is too much strain on it as I feel this can make the MS symptoms worse.
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Postby jimmylegs » Tue Nov 03, 2009 2:39 pm

hey there :) my ears were burning...

welcome to the site C, and sorry to hear about your mom.

there are some pretty standard and well documented sub-optimal nutrient conditions in both bipolar disorder, and multiple sclerosis.

a friend of mine has a bipolar diagnosis and was hospitalized in spring of 2005 and 2007. she was not hospitalized in spring 2009. this year, she had been living with me and i encouraged her and reminded her to take vitamin d3, fish oil, and b-complex, and get plenty of exercise.

smoking in particular can impair a person's zinc status, which is lower in ms patients anyway. having low zinc has a number of trickle down effects on other things, such as uric acid status (also low in ms patients). zinc is important for a wide variety of normal body functions so the low status in ms results in problems all over the body, from the eyes, to the permeability of the intestinal wall, to the blood brain barrier, it just goes on and on.

may i ask why your mom is on coumadin? just curious about the reason she's on blood thinning medication..

if you can request some bloodwork on a few of the nutritional 'usual suspects' for ms, it would be a good starting point. these include: b12, d3, uric acid, zinc, and selenium. you could also try to get a PUFA test (polyunsaturated fatty acids). i would probably throw in serum ferritin too. and vitamin E (that's important for position sensory - i lost that for a while and did a big vit E push (with tons of b complex) and my position sense came back, whew!)

i am not going to suggest that disability progressed as far as your mom's and for this long is reversible with nutrition, because the earlier you address these kinds of problems the better the recovery will be. but, you may see some improvement, and by getting her into tip top shape from the nutrition angle, she'll have the best foundation for the future.

hope that helps, and if you have any questions fire away :)

JL
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Postby lyndacarol » Tue Nov 03, 2009 7:25 pm

Cassandra -- Through the years I have come across anecdotes recounting fantastic improvements in people with MS. Unfortunately, I cannot refer you to any books telling these accounts -- maybe you can find titles for all of us. The lesson I take from these stories I've heard is that it is possible for any of us to improve -- even me, even your mother. Here is one case:

"On March 28, 1996, host Robert Stack of television's "Unsolved Mysteries" related the story of Mary Clamser of Oklahoma City, a multiple sclerosis patient for 23 years. Mrs. Clamser had relapsing-remitting MS, the most common form among women; her left leg and her bladder were most affected. Each attack lasted no longer than six months, until an attack in 1992 left her unable to walk without assistance.

On August 17, 1994, a sudden thunderstorm passed over Mrs. Clamser's house. She was in her wheelchair, preparing a bath. As she reached out to turn on the water, a bolt of lightning struck the house. Doctors estimate that at least ten thousand volts of electricity passed through her body. At first she felt "on fire" she said, full of "pins and needles." Then she suddenly realized she could feel her legs again. Since that day, improvement of her multiple sclerosis has been rapid. Two years later, she lives a completely normal life. "All symptoms of her multiple sclerosis," said Robert Stack, "are gone."

The article continued with the following description:

"This is not, of course, the first report of an affliction reversed by lightning. But the symptoms of multiple sclerosis are believed to be caused by disintegration of the insulating myelin sheaths surrounding nerve fibers in the brain and spinal cord. How a bolt of lightning could restore these insulating layers rapidly--if at all--can hardly be imagined. The obvious implication is that demyelination is not the only cause of multiple sclerosis symptoms. Something else must be happening in the brain and spinal cord of these persons--something far more reversible than demyelination.

Neurologists have long known that demyelination alone cannot explain all aspects of this disease."

Now, I DON'T think we all need to be hit by lightning! When science discovers the cause of this disease, I think we will all get our lives back.

In the meantime, we must try to stay as healthy as possible and try to remain hopeful. This is where you can help your mother at the moment, Cassie. Reading and learning about this disease can help you and me.
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Postby CassandraM » Tue Nov 03, 2009 8:55 pm

Hi again all, wow you are all so supportive, thanks so much!

I have a bit of good news about today, today my mom was really responsive! we were able to hold a normal conversation and laugh together and I took some pictures because I have no clue when she will be like this again and I wanted to capture the moments, so here they are :)

Momma laughing because of my lil photo shoot
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Me and momma
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Close up
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Me, Mom and Grandmother (Dabby)
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Mom's legs, they are stuck this way, I tried to stretch them out but she said they hurt too much to try and stretch
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OK that's all the pics, just wanted to share! oh and what can you do if someones legs are stuck curled up like that? how can you fix that?
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