Please help...pw Chronic Progressing MS (any treatment?)

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Please help...pw Chronic Progressing MS (any treatment?)

Postby ljelome » Tue Mar 12, 2013 4:19 pm

Dear everyone...i need ur help. I was diagnosed with MS since May 2010 and my 1st relapse in April 2011. I had 2 times treatment with high dose corticosteroid (1 gram/day for 3 days n tampering off with lower dose, in total i had steroid for 1 month n stop). And i had rebif for 8 months and 1,5 months respectively. I had significant improvement with those 2 treatments.

But after my 2nd attack in Aug 2011, i had 3 treatments in Nov 2011, March 2012 n Oct 2012 with the same treatment like before (only in Nov2011, i had steroid 0,5 gram/day for 3 days, 2 days tampering off n stop, and in March 2012 my neuro added Rivotril/clonazepam for my spasm). I had rebif for different period of times (1 month, 3 months and 6 months respectively, i'm still on rebif now). But i only had little or i may say no significant improvement at all. Because my condition is more or less the same.

I consulted with another neuro and he said i might develop a chronic progressing MS now, after seeing my disease's journey all this time. He told me to continue my Rebif treatment so it would help me to slow the progression.

For what i now is if a pwMS already reach a progressive phase then DMDs (Rebif,etc) is no longer working for them. Am i right?

Please help me to decide, should i continue my Rebif treatment or not? Would Rebif help me in anyway if i'm truly reach a chronic progressive phase of MS?

Thank u very much for any quick response.
Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|
ljelome
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Re: Please help...pw Chronic Progressing MS (any treatment?)

Postby lyndacarol » Tue Mar 12, 2013 6:43 pm

Linda – I believe insulin is a major player, as you know; I think diet should not trigger insulin production. In my opinion, this diet should be a very low-carb diet --remove ALL trans fats; remove all sugar (including beer, wine, etc. which have sugar), remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), and remove white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible).

In fact, since corticosteroids raise the blood sugar, I believe that steroids eventually have an adverse affect on MS.

It is my understanding that the DMD's are not prescribed for Chronic Progressive MS because they are not effective in that stage.

My suspicion is that Fatty Liver Disease is also involved in MS (one can be "skinny fat" – slender with interior fat), since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement in MS interesting (http://www.TerryWahls.com). I think diet would be the best treatment.

All the best to you.
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Re: Please help...pw Chronic Progressing MS (any treatment?)

Postby ljelome » Tue Mar 12, 2013 10:11 pm

Thank u lyndacarol...for ur quick reply.
It is my understanding that the DMD's are not prescribed for Chronic Progressive MS because they are not effective in that stage.

I'm glad that we share the same understanding. Does anyone have any article/med journal regarding to this matter?

Linda – I believe insulin is a major player, as you know; I think diet should not trigger insulin production.

Did u write it correctly? or i wrongly understand it. Pardon me.

In my opinion, this diet should be a very low-carb diet --remove ALL trans fats; remove all sugar (including beer, wine, etc. which have sugar), remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), and remove white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible).

I wish i could done ur advice about diet, but now i can't do it. I already try to reduce my sugar and milk intake. As for u to know :
1. I can't cook my own dishes due to my condition now. So i live with my parents (79 yo dad n 70 yo mom), my husband works from Monday to Friday from 7.30am to 7pm. I only depend on my mom to prepare n cook my food.
2. My very old parents have their own health problems, but i'm grateful to God that my mom can still take care of me (her 31yo daughter)
3. Rice is my basic food, so for all other indonesian people here
4. I'm not coming from a wealthy family, as i know that healthy food means a more expensive food

Now i'm looking for a second opinion to another neurologist, because my first neuro have a very narrow-minded about any new theory regarding MS. He even didn't believe about the differential diagnosis of MS (DDMS) that i gave him. He didn't believe about the CCSVI theory also. I face a dead-end when it comes to discuss about MS with him.

My second neuro now working in Eka Hospital which has a cooperation with mayo clinics. He doesn't fully understand about MS, but he has an open mind and he accepts me and he tries to help me to find a correct diagnosis for my disease. So he refers me to consult with doctors from the mayo clinic. And now i'm in the middle of gathering all my lab results all this time n making my disease's resume so he can send it to the mayo clinic's team of doctors. I presented him the DDMS and he really excited about learning it.

Now, i can only surrender to God to show me the way and the answer to my disease. I just want to have the right diagnosis n the right treatment for my disease, that's all. Because, how can u treat a disease if u don't know what exactly u are suffering from?

For anyone information, i had catheter venography 2 weeks ago here in Indonesia with my IR (dr.Prijo). And dr. Sclafani saw that i might have a stenotic valve in both my IJVs. I only have a temporary conclusion from him now. I hope dr. Sclafani can study more about what's really wrong with my body (especially my veins) and i'm so thankful to him for his kindly help. God bless u.

Sorry for my very long story. I just really need a friend to share my feelings.
Thank u very much.
Linda
ljelome
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Re: Please help...pw Chronic Progressing MS (any treatment?)

Postby ljelome » Tue Mar 12, 2013 10:21 pm

To anyone who might have post the answer to my question, i would appreciate it if u would answer my question in my topic here. I'm really sorry because i have a lame eyes right now, so i can't read too long on my computer's screen.

Thank u so much.
Linda
ljelome
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Posts: 126
Joined: Fri Jan 25, 2013 9:46 pm
Location: Jakarta, Indonesia


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