Advice anyone?

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Advice anyone?

Postby Sandrine » Thu Feb 12, 2009 1:59 am

Hi,

I'm concerned because of my sister...

My sister and me were both diagnosed with MS in autumn 2006. We had the same onset, same number of lesions etc. She was 23 and I was 26.

We started both with Rebif 44, we both had another flare in april 2007 (ON for her, nystagmus for me) and than everything seemed to be fine. FOR ME it is still fine, I'm okay.

But from april 2008 until now my sister had at least 6 exacerbations, 5 were treated with IV steroids. She had her exams (she studies law), so she was stressed... In january 2009 she had another MRI. There are 7 lesions in her upper spine (neck area), in 2006 there was only one. In her brain nothing changed.

So Rebif seems not to work for her. Now we are thinking about Tysabri or Copaxone. She is afraid of Tysabri (fear is not a good precondition for a succesfull treatment?!). And Copaxone seems to be even weaker than interferon beta/Rebif.

Now my idea so far:
We are very similar, nearly like twins. We had EBV infection at the same age, we alwys lived together, we were vegetarians...

The only difference between me and her is her hay fever, she is highly allergic to pollen of plants that are in flower in late spring and summer. She had only 1 excerbation during her usual hay fever period. During that flare she had no hay fever symptoms. That was REALLY strange. Her first ms flare occured when she tried an allergy desensitization.

So is it possible that her immune system needs a target like pollen so it does not attack her CNS? Because if that is true, Copaxone would be worth a try. As far as I understood in theory Cop mimmicks the MBP to prevent the immune cells to attack the real myelin...

So maybe it could work for her special case?

What do you think?

Thank you and I hope my message is clear (I'm not a native speaker as you may notice).

Sandrine
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Postby jimmylegs » Thu Feb 12, 2009 6:03 am

to all vegetarian or vegan ms-ers: please investigate levels of protein, iron, d3, b12/b-complex, zinc, and omega 3s. also:
"Vitamin A deficiencies are often found in conjunction with iron deficiencies zinc deficiencies or protein deficiencies."
JL
ex 15-yr vegan
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Re: Advice anyone?

Postby HarryZ » Thu Feb 12, 2009 7:46 am

Sandrine,

When it comes to MS, it is very difficult if not impossible to determine which medication will work for the patient. In most cases, it is a "trial and error" situation and until one tries a particular drug, you won't know what kind of effectiveness it will give you.

Obviously Rebif isn't working for your sister so trying Copaxone is an option. Depending on who you talk to, Copaxone is good and /or not effective at all when it comes to treating MS.

Tysabri is an option but like you said, there is a level of fear associated with it because of PML.

I would encourage your sister to sit down with her neurologist and ask as many questions as she can about these drugs. Learn as much as possible about them and then make an informed decision. The best of luck.

Harry
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Postby cheerleader » Thu Feb 12, 2009 8:09 am

Sandrine...
I'm sorry for you and your sister. In one way, it might be good to have each other for support. In another sense, it's hard to watch a loved one suffer. Copaxone is not a "weaker" therapy....just different. You are right, it gives the immune system something else to take on. It also trains naive t-cells not to attack myelin. It takes around six months to become fully effective.

The biggest connection you made is your sister's stress levels. As I've just learned for my husband, that can make a huge difference between stability and flares. Can she find ways to deal with her stress? Meditation, yoga, visualization, regular exercise?

Jimmy's so right about vitamin and mineral depletion in vegetarian diets. A well chosen B complex, magnesium/zinc/calcium, vitamin D, and omega 3 oil supplements could really help. I'm not sure about the allergy tie in. I know histamine reaction is part of the puzzle, but do not understand it.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby daverestonvirginia » Thu Feb 12, 2009 10:06 am

My sister and I also have MS. My sister was diagnosed about a half a dozen years before me. Since she had been doing pretty well using Copaxone, I decided to use it and have a very good three years myself. I also take several supplements, mainly vitamin d and Omega 3, which I have now talked my sister into taking. Since she is a doctor she did not believe in the supplements at first and was just using the meds, but she has come around with time. Dave
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Postby lionheart » Thu Feb 12, 2009 10:34 am

Wow, both siblings with ms, sounds devastatingly discouraging re inheritance factor...

I also was thinking that Copaxone was weaker than Tysabri. Isn't Tysabry for more serious cases?

What is neuro's opinion? Or it is your neuro that suggested to choose b/n both? BTW do you visit the same neuro?
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Postby Sandrine » Thu Feb 12, 2009 11:41 am

Thank you so much for your replies.

I forgot to mention: My sister and me both take fish oil/omega 3 with vitamin E and also some B vitamins. We should think at least about additional vitamin D, I suppose... There is a lot of information about supplements in this forum I realised... But she really eats healthy (especially compared to me during the last weeks :oops: )

We do not live in the same city, so we have different neuros. Her neuro said he is not sure if her case is "serious enough" for tysabri. After all her flares last year and this year her right foot is completely numb, without any feelings. Serious enough? I don't know. The neuro also said he is a bit helpless and not sure. So she is going to see some doctors in hospital specialised for MS to get another opinion. He favors Copaxone I think.

Her stress level - yes, we also thought that could make the difference. I'm working on my phd that is stressfull enough, but maybe I have another way of coping? She puts herself under pressure, more than I do, I think. Oh, another difference: I visited a psychotherapist for more than one year after my diagnosis because my friends were overextended with my tears and anger and fear... She didn't want.

We also thought about anti-stress-stuff. She liked very much the osteopathy treatment she had a few times so maybe she should do that again. Unfortunately that's expensive. She is going to be trainee lawyer (which means not very much money) but hopefully I will earn more from april when I got my phd (as a phd student I get only half of a regular salary). Then I'm going to pay that. But some meditation or relax techniques could be useful. What do you recommend? I tried progressive muscle relaxation in the past, was okay I think but unfortunately I stopped practising (I'm lazy)...

The more I think about her obviously bored and aggressive immune system (allergy - flare - allergy -flare) the more I like the idea of Copaxone. But 6 months until full effectiveness is quiet a long time...

Thank you again,
Sandrine
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Postby jimmylegs » Thu Feb 12, 2009 11:53 am

hey there, good to hear you're both taking some precautions nutrition wise :) stress makes you dump minerals and the b-complex. how much b are you two on? do you take any minerals? if you do start on d3, consider getting your hands on a calcium magnesium blend too.
you can do a lot to combat stressful times with nutrition as well as any other healthy coping methods that apply, hope you both get it figured out quick!
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Postby gainsbourg » Thu Feb 12, 2009 2:35 pm

Sandrine wrote:The only difference between me and her is her hay fever, she is highly allergic to pollen of plants

Has your sister taken many antihistamines by any chance? This may partly account for the greater severity of her symptoms because so many with MS have found that histamine supplementation helps as much with symptoms as taking conventional drugs.

Sadly, it's a rare neurologist who advises MS patients to avoid stress, so I hope you can ignore the massive amount of scepticism regarding the role of the mind in creating physical illness. Take a look at the incredible findings of this 2004 study for example:

Researchers at Aarhus University in Denmark found parents who had lost a child unexpectedly were 50% more likely to develop MS than parents who had not


news report re. this study



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Postby Sandrine » Fri Feb 13, 2009 7:22 am

Hi,

thank you again... About the B complex I'm not sure, I will have a look when I'm back at home.

Concerning D3 and Mg/Ca - it is best to combine D3 and Ca and take Mg some hours later, right??

@gainsbourg:

She takes a lot of antihistamines during her "hay fever period" in late spring and summer. E.g. so called Cetirizine. Do you have any data about histamines/antihistamines and MS?

Thank you for the 2004-study. I havent known it.

I really believe in stress as a trigger for flares and excerbations or even as a trigger for development of a clinical MS that was subclinical before. My first flare was when my sister was checked for MS and I was really scared. I think continuous stress is also very bad for the immune system. Our stress level was very similar in the past when our parents got divorced and behaved like Michael Douglas and Kathleen Turner in The War of The Roses fighting against each other and went to court for nine years.

As I mentioned our way of coping is a bit different - I'm the one reading about MS and asking questions, she tried to ignore it. I'm also more emotional: I cry when I'm sad and scream when I'm angry... Hot temper. That is annoying for my friends but I can't keep things inside. She can.

I'm not sure that's a wise behaviour (control the own feelings) when it comes to MS. But I can't tell her she should scream and shout and cry if she feels like it, that sounds like I'd blame her for her flares?!? And she IS more quiet than me - that's her.

Thank you,
Sandrine
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Postby jimmylegs » Fri Feb 13, 2009 7:37 am

hi sandrine, it's good to take d3 calcium and magnesium all together, but do take some of the magnesium by itself at a different time, yes. don't forget zinc, 25mg per day should be sufficient even for vegetarians. you can take 50mg but i don't think it's that good an idea over the long term. zinc is a good thing to monitor - you don't want too much, 18 is the average in healthy controls, normal range 11.5-18.5. ms females average approx 12 (range approx 10-14). i was a vegan for 15 yrs as i said above (not any more!!!!), when i got tested for zinc my level was 8.6.
hope that helps,
JL
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Postby HarryZ » Fri Feb 13, 2009 7:43 am

She takes a lot of antihistamines during her "hay fever period" in late spring and summer. E.g. so called Cetirizine. Do you have any data about histamines/antihistamines and MS?


PMFJI, but I can provide you some information about the use of histamine in the treatment of MS symptoms.

When my wife was alive, she used a histamine treatment called Prokarin which greatly relieved many of her nasty symptoms. The treatment is a transdermal patch which is totally painless and has little if any side effects. It allows the controlled release of histamine diphosphate into your system. This produces the H2 neuro-receptor which facilitates nerve impulse conduction. The H2 receptor is not to be confused with the H1 histamine receptor which is responsible for all those allergy reactions people suffer.

To get a better idea of how this works, go to www.edmsllc.com and read up on it.

There was one clinical trial done with Prokarin on MS patients but unfortunately the person who developed the drug is not part of big pharma and thus does not have the resources to pour millions into further trials.

Hope this helps a bit.

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