Need some help please

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Need some help please

Postby Bluecheese » Sat Jul 27, 2013 8:38 pm

Hi everyone, long time lurker, first time poster. I'm 28, female and I have 2 older sisters with MS, the 34yr old doesn't live with me and is on no medication and her MS gives her migraines, tremors, optic neuritis and gait problems. The 36yr old sister, that I live with, is much worse.

She was diagnosed May 2012, had ON in 09, and while waiting for the betaferon nurse from MS Australia, ie 4 weeks, she had relapsed badly. She couldn't walk, her arms were twisted like she had a stroke, incontinence problems, cognitive issues, and both sides of her body were severely weak/not functioning. The MRI showed major disease activity, at least 8 lesions. Her initial neurologist wasn't the best so we took her to A&E and she had 5 days of steroids, almost good as new and gotva 2nd neurologist there. July 2012 she started Tysabri,and for a few months it seemed to work. I might mention her neuro didn't tell her the risks of Tysabri, ie PML, and it was all so new to us and so he pretty much 'told' her she was having it, as opposed to it being a joint decision. She went back to work 6 hours a day, walking was sort of tricky but doable, then she got the flu in November. Seeing the neurologist every 3 months, she went from walking unaided, to using a cane, to using Canadian crutches and her next Tysabri this week I'll be taking her in a wheelchair as the walking is too much for her. Finally 2 months ago the neurologist said 'oh something's wrong' and wrote a prescription for the steroids that he forgot to do in February (!). The steroids did nothing this time round, from what I can assume means there's no inflammation happening. 2 weeks ago my sister had a lumbar puncture and another MRI to look for the PML, as her JC tests have always come back negative (when we've had to remind the neuro to take her blood for it) and there's a possibility she may need to go on chemo and get a bone marrow transplant to 'reset' her immune system.

She's been seeing the MS physiotherapist every few months since July 2012, and has done every exercise possible to improve her walking, while on and off the Baclofen (it eased her spasticity slightly, but she couldn't function with the fatigue) and her walking and balance is just getting worse. She's had 13 Tysabri infusions, and while her MRI shows her brain has no disease activity, it doesn't explain why her walking has badly gone downhill? I've asked her neurologist if there's a possibility she was mis diagnosed with RRMS when it is SPMS, he admitted it was a possibility and that he doesn't know and will possibly refer her to another neurologist. All I can think is that because she was so bad when she was admitted June 2012 to hospital, that the neuros opinion is that 'we'll you're walking again, you should be thankful for that' and that infuriates me. I'd appreciate any thoughts and opinions, thank you!,

Minnie
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Re: Need some help please

Postby jimmylegs » Sun Jul 28, 2013 4:29 am

hi and welcome, minnie. unfortunately I can't be much help where side effects of meds are concerned, but if you are interested, I could provide some potentially useful nutrition info. let me know!
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Need some help please

Postby Bluecheese » Sun Jul 28, 2013 4:44 am

Thanks jimmy, she has a healthy diet, lots of fruit n vegetables and water every day, gluten free diet (it makes her sick now with the MS) and she has chicken and/or fish 5 times a week. She has her daily vitamins; c, d3, the b's, magnesium, krill oil, that's all I can think of right now. We've tried the anti inflammatory diet and followed Dr Wahl's suggestions, just down hill I'm afraid :( but thanks anyway!
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Re: Need some help please

Postby jimmylegs » Sun Jul 28, 2013 4:56 am

hey there good to hear about your sis' healthy diet. has she had any blood tests done on the nutrient levels? what is the form of magnesium taken? how much mag in relation to the d3? and how is the taking of the d3 and the magnesium timed? lastly, is there any zinc in the picture, and is it balanced with copper? these details can make a huge difference.. I've been on the wrong side of d3 and mag before, and it can be pretty scary.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Need some help please

Postby Bluecheese » Sun Jul 28, 2013 5:36 am

She hasn't had any blood tests done, her neuro didn't seem fussed when I mentioned her daily vitamin intake. I'm not sur how much magnesium she takes, but its one pill in the morning and she has 2000IU over the course of th day of vitamin d3. She doesn't have any copper or zinc either. What happens on the wrong side of magnesium and vitamin d3 together?
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Re: Need some help please

Postby jimmylegs » Sun Jul 28, 2013 6:45 am

ok there are lots of specifics that can be teased out of existing research on ms patients, but the details are far from front and centre with mainstream docs.

if you can find out specific amounts and forms of everything, that can help me assess the supplement regimen.

if her diet is low in zinc (sounds like it, esp if gluten makes her worse) and no zinc supplement, that can be bad on its own since ms patients have lower zinc levels. but it can be doubly bad because without zinc its harder to absorb other nutrients like b12, d3, and magnesium. that is the tip of a very complicated iceberg but it's important stuff to know.

gluten free diet can help slow zinc depletion (and iron depletion etc) but it can't make a deficient diet replete for zinc or other nutrients. red meat and shellfish are huge players in the zinc dept. liver, venison, and oysters are the top three. and naturally balanced with copper and iron, which can't be said of supplements.

ok so to your question on magnesium and d3 interactions: the form of magnesium should be a soluble, organic, absorbable form like magnesium glycinate. bathing in and Epsom salts bath (magnesiu sulfate) or even better, magnesium chloride flakes, used according to package directions, could also be useful to release the muscles.

when taking d3 it must be balanced with magnesium and some of the daily magnesium should be taken with the d3, and some should be taken on its own. although her daily intake of 2000IU doesn't sound too high compared to some others, if the only magnesium taken is a poorly absorbed type and gets taken in the same dose as d3, then the d3 will monopolize what magnesium it can get for its own purposes, and there will be insufficient magnesium available to the body for all the other hundreds of things it's supposed to be doing. like helping muscles relax.

I drove my magnesium down by having low zinc and too much d3 intake with insufficient and poorly timed magnesium. it seized up random muscles in odd ways that often felt life-threatening, eg issues with my throat seizing and blocking my airway.

blood tests are really key here. I strongly recommend finding out some levels. lots of specific bloodwork targets and info here: www.thisisms.com/ftopict-2489.html.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Need some help please

Postby Ladymac » Sun Jul 28, 2013 7:02 am

Bluecheese wrote:She's been seeing the MS physiotherapist every few months since July 2012, and has done every exercise possible to improve her walking, while on and off the Baclofen (it eased her spasticity slightly, but she couldn't function with the fatigue) and her walking and balance is just getting worse. She's had 13 Tysabri infusions, and while her MRI shows her brain has no disease activity, it doesn't explain why her walking has badly gone downhill? I've asked her neurologist if there's a possibility she was mis diagnosed with RRMS when it is SPMS, he admitted it was a possibility and that he doesn't know and will possibly refer her to another neurologist. All I can think is that because she was so bad when she was admitted June 2012 to hospital, that the neuros opinion is that 'we'll you're walking again, you should be thankful for that' and that infuriates me. I'd appreciate any thoughts and opinions, thank you!,

Minnie


Hi Minnie,
any
How awful of a time your sister has had! My thoughts and prayers are for you, your family and sisters.

Every time I have an acute exacerbation and end up in the hospital they do the MRI and it is a weird phenomenum. Some time there is disease activity showing (enhanced on the MRI) and some times not. However, whether it does or doesn't show on the MRI, I have learned that I can have an exacerbation with or without it showing on the MRI. I know I am not the only one. I have a very close friend about 10 yrs older than me who has SPMS now and she goes to a different MS Center than I do. Her MS Neurologist put her on Tecfidera. She has gone from wheelchair bound to being able to do some walking, albeit slow and getting better and more steadier. She is about to start her 3rd month. She is on the Board of our State MS Society and has been working with people for years through support groups, education etc. She is amazed at how much better she is doing. Another point on this is that she also has had many years of having exacerbations that sometimes do and don't show new disease activity on her MRI's as well. Her son and daughter-in-law are both doctors and have seen patients with the same. I need to spend some time researching this. I know I got into a situation where I was out of town and ended up in the ER and the doctor got a staff regular neurologist to read the MRI and he said if you don't have disease activity showing on the MRI then you can't be exacerbating. He was very wrong. Thank God my husband got me home and back to the specialist at my MS center for treatment.

The steriod treatment (in my case and my friend is Solumedrol 1000mg per day for 3 to 5 days IV) is critical in stopping something from getting worse and causing more damage. In my friends case, many years ago she had ON and she was in a rural hospital where it took them 2 days before they started the steriod, she ended up not regaining sight in that eye. When she got ON in the other eye years later, she demanded immediate steroid treatment and she returned to baseline and normal quickly.

Regarding the Baclofen. I take 20mg three times a day along with 800 mg of Neurontin twice a day. In the beginning my Neuro titrated me up slowly because it did have a huge sedative effect, however within a few weeks in my case it passed, and I do not have fatigue on it.

The Tecfidera pill has increased my ability to do more, I am working on reconditioning my arms, legs and back because I am out of shape from pre-Tecfidera I had gone down hill physically and cognitively so much it is easy to wear me out physically with sore muscles, back, etc.

I don't know what your situation is where you live if there is an actual MS Center around, but I found out as long as many others that regular Neurologists who "see MS patients" vs Neurologists that their specialty is MS and that is all they see and are in a center that is hooked up to the research and support staff and programs has been a night and day difference for me. Perhaps a second opinion at an MS Center for your sister? Gosh, it is really sad how hard she has had to battle this dreadful disease.

Hopeful for you all. Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Need some help please

Postby want2bike » Sun Jul 28, 2013 7:03 am

If you believe Dr. Bergman MS is cause by toxins or deficiency in nutrients. As Jimmy say you should get some blood work done to determine if there is a nutritional deficiency. I would start out with juicing program which would run a large amount of nutrients through your daughter body. Most healers I am familiar with recommend any where from 5000 to 10000 IU of vitamin D but best to have the level check. Getting vitamin D from 20 minutes in the sun each day is best. When looking for the toxins remember drugs are toxic and not good for the body. That is why they have all the side effects. The problem I had was the mercury in my teeth. If your daughter has a lot of dental work that could be the problem and you might want to see a mercury free dentist to have the levels checked. Not sure if you are aware of the problems with aspartame but it give the same symptoms as MS. You need to examine your environment carefully to make sure it is clean. Hoping you the best in locating the problem.

http://www.youtube.com/watch?v=zGmyUppmt-g

http://orbisvitae.com/ubbthreads/ubbthr ... mber=57207

http://www.youtube.com/watch?v=B0WWXzJu ... re=related

http://www.youtube.com/watch?v=yhUuf2QZd_E
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Re: Need some help please

Postby jimmylegs » Sun Jul 28, 2013 7:06 am

a good video on how calcium triggers contraction of muscles http://www.youtube.com/watch?v=CepeYFvqmk4
never mind the jargon, still useful though.

when calcium and magnesium are not balanced, that's where the trouble starts. supplemental d3 can boost calcium and deplete magnesium and then the muscles are in trouble. hence the recent findings in the media along the lines of 'supplements kill you' (via causing heart problems, incidentally) .. not true if done right. I think the real conclusion that should be drawn from those research findings, is that supplementation *done badly* can kill. certainly taking only calcium and thereby messing with your body's calcium magnesium balance could have dangerous consequences for muscles.. heart muscle for example...

in the last few seconds of the vid they get close to approaching the magnesium side of the equation. at 1:53 the last sentence starts 'without calcium...' that is where magnesium steps in. i'll see if I can find a video for that side of things too.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Need some help please

Postby jimmylegs » Sun Jul 28, 2013 7:08 am

sister, w2b!

nb: high d3 intakes can be dangerous if you don't know the levels, and balance the intakes, of d3 AND its various cofactors.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Need some help please

Postby Bluecheese » Sun Jul 28, 2013 7:48 am

Thanks everyone for replying. Ladymac, thank you, I've been telling her neurologist something's been going on regardless of the no disease activity on the MRI's, unfortunately he is an MS specialist neurologist. He's quite forgetful, young, and doesn't seem too bothered by any of this, hopefully in a few months we will be moving to another area and try another neurologist. I'm not too impressed frankly, maybe it's just Western Sydney health care? :(

That's wonderful that you and your friend have had a huge change with the Tecfidera, Australia's just approved it 4 days ago and we're waiting til August for it to be made cheaper through the pharmaceutical scheme. I'd be interested to get my sister on something like that, that seems beneficial if she does have SPMS, but wonder if that's going backward from the Tysabri? I really don't like the Tysabri and worry what will happen if things do turn into PML, but that probably would have been better thought out before starting it :( it makes sense that the quicker you start the steroids, the better chance there is of reversing things. I just wish we could repair it now. She was on the baclofen for 2 months and unfortunately that's all that's available at this time, our government has rejected Aubagio to be funded. It's quite frustrating, she would exercise 2hrs a day and play sports and work full time and now it's just shut her down completely. Emotionally she's had a really hard time with it, and I know I'd be worse, so I have to be thankful for that.

Thanks Jimmy and want2bike, I'll definitely look into getting some blood work done for her. This time last year she wasn't taking magnesium, just the calcium and vitamin d3 pills and her walking was quite improved. Though it is hard not knowing for sure if this is the natural disease progression, or something else interfering. My sister hasn't had a lot of dental work and there isn't any mercury in there, thank god, one thing less to be worried about!
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Re: Need some help please

Postby lyndacarol » Sun Jul 28, 2013 10:11 am

Bluecheese wrote:I've been telling her neurologist something's been going on regardless of the no disease activity on the MRI's, unfortunately he is an MS specialist neurologist. He's quite forgetful, young, and doesn't seem too bothered by any of this, hopefully in a few months we will be moving to another area and try another neurologist. I'm not too impressed frankly, maybe it's just Western Sydney health care? :(

...I'll definitely look into getting some blood work done for her.


Welcome to ThisIsMS, Bluecheese. I admire you for your obvious love and desire to help your sisters. You have found a supportive group of friends, who share some ideas and who also hold individual unique ideas.

I share many ideas with want2bike, jimmylegs, and others: "Getting vitamin D from 20 minutes in the sun each day is best." Pharmaceutical drugs have toxic, negative side effects to consider. I think juicing is very helpful in absorbing nutrients. I suspect we people with MS have a problem absorbing nutrients from the digestive tract; therefore, soaking in an Epsom salts bath is an excellent way to absorb magnesium (in the form of magnesium sulfate) through the skin.

Since I believe that excess insulin plays a significant role in MS symptoms, I encourage you/your sister to request a "fasting blood insulin test" (this is NOT the same as a glucose test) be included in the blood work to be done for her. When the blood sample is drawn, the insulin test should be done as soon as possible (if the testing cannot be done SOON, the sample must be frozen in order to preserve the insulin for an accurate result – insulin breaks down quickly if the sample is not frozen). The optimal result she would want to receive is 3 UU/ML or lower. (My insulin test results have never been below 9.) Unfortunately, there is no medication available to lower the insulin level; diet (with exercise) is the only method, at this time.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Need some help please

Postby Ladymac » Sun Jul 28, 2013 1:19 pm

Bluecheese wrote:Thanks everyone for replying. Ladymac, thank you, I've been telling her neurologist something's been going on regardless of the no disease activity on the MRI's, unfortunately he is an MS specialist neurologist. He's quite forgetful, young, and doesn't seem too bothered by any of this, hopefully in a few months we will be moving to another area and try another neurologist. I'm not too impressed frankly, maybe it's just Western Sydney health care? :(


>Ladymac>>>>Not every doctor is for everyone. It has to be a good fit on both sides. Perhaps there is another center your sister can get a second opinion? I would look into hospitals that have Universities attached to them because they have a great deal of compassion for researching and not just letting something go. Some of the World's reknown MS GURU's do MS Research at Universities and affiliate with major hospitals.<<<<<<<

Bluecheese wrote:That's wonderful that you and your friend have had a huge change with the Tecfidera, Australia's just approved it 4 days ago and we're waiting til August for it to be made cheaper through the pharmaceutical scheme. I'd be interested to get my sister on something like that, that seems beneficial if she does have SPMS, but wonder if that's going backward from the Tysabri? I really don't like the Tysabri and worry what will happen if things do turn into PML, but that probably would have been better thought out before starting it :( it makes sense that the quicker you start the steroids, the better chance there is of reversing things. I just wish we could repair it now. She was on the baclofen for 2 months and unfortunately that's all that's available at this time, our government has rejected Aubagio to be funded. It's quite frustrating, she would exercise 2hrs a day and play sports and work full time and now it's just shut her down completely. Emotionally she's had a really hard time with it, and I know I'd be worse, so I have to be thankful for that.


>Ladymac>>>>>With total respect for and empathy for what your sister is going through, I would recommend something that has turned many chronic and terminally ill patients lives around. There are Doctors of Psychology, Psychologists, who besides doing regular counceling/therapy also work as "Life Coaches." When given the severe blow of a non-curable diagnosis along with the actual and very real physical and mental conditions and treatments, many people feel blown away by the impact in their lives. For me it was "This is not what I had planned for my life, my retirement, etc." I was a dancer, downhill skier, white water canoeing, major competitive person who had "The BRAKES PUT ON" and had a fabulous professional career and kids with all their activities and that all came to a skreetching halt as things were never to be the same as I once knew them to be. A Life Coach can work on having her find what positive things she can still do, do differently, and even suggest things that are totally new and different in her life to help her feel and satisfied. For some of us having to say "no" when we used to be able to do so much more or to learn how to plan with rest and diet and exercise and all the doctors appointments to be able to take care of ourselves and be fulfilled. We are not crazy, having to see a shrink....it is in our head. They are called Lesions and there isn't anything that we can do about what is there now and what some day may be (unless a cure comes our way), but we can do the best we can to minimize our risks, educate ourselves on the disease and be flexible enough in our own minds to not let the disease define us. We must still stay in charge of our lives and our treatments. Finding the right team of doctors (Primary Care, Neurologist, Endoncrinologist, Pain Clinic for some people, Life Coach/Life Therapist) may take several to be fired along the way by us, but when we find the right team, the relief is tremendous and the release of stress and the heavy heart about what has and is happening to us becomes less of a burden as we become empowered to make our own decisions and be fully informed and in charge of our care and our lives. I encourage your sister and you to find an MS Support Group in your area and be with others and share your experiences but also learn from others who have been down some of the similar paths.

May God Bless you and your family and help you find peace.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Need some help please

Postby jimmylegs » Sun Jul 28, 2013 1:29 pm

okay this is not really the kind of video I was after but although a little less technical than I would have preferred, it is basically making the same point:

balancing calcium and magnesium at the cellular level
http://www.youtube.com/watch?v=5guQwhRhV60
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Need some help please

Postby jimmylegs » Sun Jul 28, 2013 5:22 pm

this is an excellent video. not an animation but an extremely accurate presentation:

http://www.youtube.com/watch?v=3wtUn1gWgaw
a couple highlights:
'spasm' first comes into it shortly after the 4m30s mark with respect to vasoconstriction
6m20s is where muscle spasm comes into it specifically.
7m16s blood thickness or viscosity is covered.

towards the end he says serum mag is not the best test, but, it can actually be pretty useful.. and because serum magnesium is extensively measured and reported in research, it makes it easier when comparing your results against those available in studies.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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