hi i'm a newbie

New members should feel free to introduce themselves here

hi i'm a newbie

Postby ljelome » Tue Jan 29, 2013 5:22 am

Hi my name is linda, i'm from Indonesia. I'm diagnosed w/ MS since May 2010. My first symptomps was tingling on my arms and legs (come and go first then it stays permanently), it happened in 2008. Then gradually my symptomps add through time. Fogging, balance problem, bladder and bowel issue, fatigue, optic neuritis on my left eye and then after my 2nd exacerbations since diagnosed (last Aug 2011), i gain one more problem which is stiffness on my back n legs and footdrop on both legs. It makes me having difficulty in walking. I try to do BBD since mid 2011, but it doesn't stop me from having exacerbations. For every exacerbations my neurologist will put me on high dose of steroid n Rebif. But i don't use Rebif constantly only for several months (1-8 months). Now my doctor put me on Rebif for 6 months since my 3rd episode last Oct'12, but i don't find significant improvements after taking Rebif for months.

Then i tried to collect more informations on the internet about alternative medications for MS that would do, and i found out about CCSVI. Since MS is not so popular in my country, my neurologist had not heard about CCSVI. But i managed to make him referred me to do CCSVI examination here. I have CT venogram and Doppler USG. My CT says there's no abnormality with my veins (no stenosis), but my Doppler USG's result indicating i have valve issues in both my IJV (they can't be seen anywhere) but there's no reflux in both IJV and VV in supine n upright position. And there's one more that haven't been investigated which is my deep cerebral veins. It seems my sonographer doesn't know the wright technique yet.

If i do have valve issues would it be affecting my blood flow ? (i read about valvular problem in IJV that can cause reflux if i have valsava maneuver).

Well, i'm really glad to find this forum. I hope someone could help me.

Thank you.

Warm regards,
linda
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
Family Elder
 
Posts: 126
Joined: Fri Jan 25, 2013 9:46 pm
Location: Jakarta, Indonesia

Re: hi i'm a newbie

Postby want2bike » Tue Jan 29, 2013 10:54 am

Check out the diet section. Diet is the key to healing. There was a study in England showing people doing the drugs did worse.

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.nytimes.com/2012/07/18/healt ... html?_r=3&
want2bike
Family Elder
 
Posts: 742
Joined: Thu Sep 15, 2011 9:15 am

Re: hi i'm a newbie

Postby ljelome » Tue Jan 29, 2013 9:54 pm

Thank u want2bike for your information...i do believe that diet is important too. When i was doing the BBD diet in mid 2011, after my 1st exacerbations since dx, i realized that my symptomps almost gone completely, the tingling on my legs n arms almost gone (just a lil bit left), the fogging gone, my balance improved n my energy level was high though my bladder n bowel problem still persist, but i felt alive again then.

But unfortunately it just last for 1,5 month, then my symptomps come back again (in Aug 2011). I tried doing the diet more strictly than before, increasing my supplement intake, but no use, i got worse. After 3 months after my 2nd episode after dx, i decided to take steroid again but this time it didn't help much. Then on March 2012, i got another steroid and still the same it didn't help much. But strangely, in my 3rd episode after dx (last Oct 2012), i got hospitalized again and got another high dose steroid, and the result was beyond my expectation, my strength n my balanced improved better than before. I don't know why. Is it because i got treated immediately with steroid that make me feel better? Coz the same happened too in my 1st episode (not long after my episode, i got treated with high dose of steroid too)

I still doing the BBD but no too strict now, sometimes i eat bread, biscuits, cheese, sugar, chips and all other stuff that i shouldn't eat. But i don't drink milk anymore, which i used to have everyday. I eat a lot of fruits and vegetables more than i used to. And i also take omega 3 supplement everyday.

Oh maybe it's not works the same on every one coz we don't know yet what causing MS maybe it's just multifactorial. I hope i could find out what's wrong with my body that causing this so called autoimmune disease. There should be a trigger that causing all this, isn't it?

Thank you again.

Warm regards,
Linda
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
Family Elder
 
Posts: 126
Joined: Fri Jan 25, 2013 9:46 pm
Location: Jakarta, Indonesia

Re: hi i'm a newbie

Postby want2bike » Wed Jan 30, 2013 11:04 pm

Sometimes it take time to see the results of a diet. Roger MacDougall spent 4 years following the paleo diet before he saw any significant signs of improvement. Hope you can find a diet which works for you.

http://www.franksherwood.com/tnms.htm
want2bike
Family Elder
 
Posts: 742
Joined: Thu Sep 15, 2011 9:15 am

Re: hi i'm a newbie

Postby ljelome » Wed Jan 30, 2013 11:35 pm

Hohoho...i did find out Roger McDougall too in my search for alternative treatments for MS. That's why i try to do the same diet. But maybe my flesh side still wants to enjoy what i used to have, so i don't follow the diet very strictly back then and now too.

Maybe it takes time to see the result, i'll be sure trying to eat as healthy as suggested.

And how about your own experience with the diet? Does it help in improving your symptomps?

Thank you for your information n sharing.

Warm regards,
Linda
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
Family Elder
 
Posts: 126
Joined: Fri Jan 25, 2013 9:46 pm
Location: Jakarta, Indonesia

Re: hi i'm a newbie

Postby want2bike » Thu Jan 31, 2013 7:56 am

My story began about 5 years ago. I was at a dance and started feeling dizzy with double vision. My girl friend took me to the emergency room and they ran test. One of the doctors told me I showed signs of MS in my lower body due to a reflex test. With the CAT scans and MRI's they could not find any evidence of MS but I seem to have all the symptoms. After that I had symptoms of chronic fatique syndrone, pins and needles running up my arms, nausea, dizziness, muscle spasms in my back and so tired all the time. My PCP gave me some blood pressure medicine and told me it was old age and I would have to learn to live with it. I had been running to the emergency room for some time with various problems. Since they could not put a name on what I had and the only clue was MS in my lower body I started Googling MS and symptoms. I found Dr. Swanks diet and started it. Still wasn't seeing the results. I found that mercury poisoning had same symptoms as MS. I had 10 root canals and an assortment of mercury fillings and began to think that was my problem. I got Dr. McGuires book on mercury detoxification and started taking the supplements recommended to get the mercury out of my body. Within a week all my symptoms were gone. After that I saw a mercury free dentist and had my teeth taken care of. Been trying to move towards a vegan diet and all my symptoms are gone.

The key to healing MS or any of these neurological diseases is to eliminate the toxins which are causing the disease and a healthy diet which allows the body to heal. That is what a holistic doctor will do but you can do the same if you investigate and find out what toxins you are exposed to and then eat a healthy diet. Our world is becoming more and more toxic everyday. Think the book that opened my eyes was The Makers Diet. It is about a doctor who cured himself of Crohn's disease through diet. When you do the investigating you will find many have been helped by diet but very few by drugs. These drugs at best give temporary relief and eventual will destroy the body. I will post some sites of real people taking the drugs and you can see for yourself what they have to say. Changing your diet is not easy but it is the only path to true healing.

http://www.dentalwellness4u.com/browse/guide.html

http://www.youtube.com/watch?v=9-qhxa-3 ... tube_gdata

http://www.facebook.com/notes/ccsvi-in- ... 1295097210

http://www.askapatient.com/viewrating.a ... e=COPAXONE
want2bike
Family Elder
 
Posts: 742
Joined: Thu Sep 15, 2011 9:15 am

Re: hi i'm a newbie

Postby ljelome » Thu Jan 31, 2013 9:58 pm

Hi, thank u for your sharing n informations.
I wonder could u've been misdiagnosed w/ MS instead what u have is actually mercury poisoning? That's why your symptomps gone immediately after your mercury fillings taken out.

I agree with u that drugs is bad for our body, especially if the drugs is used to treat the wrong disease.

But in my case, i just had one tooth filling but i don't think it has mercury in it. It happened also after i had diagnosed w/ MS. And from the drugs i've been using i find that the steroid do help in my exacerbation to tamper it down, maybe tampering off the inflammation that's going on. With Rebif i only have it on and off not more than 8 months, i just have mild side effets the next day like flu like syndrome sometimes, fever occasionally, pain on the injection sites especially after 8 months using it. And i don't plan to use it for a long term either. I only take it just to give me enough time to find out what's really wrong w/ my body.

I do believe the food we eat will affect our body healthiness, i will surely try to eat healthy food (especially non-inflammatory ones) n supplements that's needed.

I hope you will stay healthy always n no symptomps will ever appear again.
Your doing a good job.

God bless n keep me informed too.

Warm regards,

Linda
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
Family Elder
 
Posts: 126
Joined: Fri Jan 25, 2013 9:46 pm
Location: Jakarta, Indonesia

Re: hi i'm a newbie

Postby want2bike » Fri Feb 01, 2013 9:07 am

Not sure if you have ever had your vitamin D level check but most people are deficient in vitamin D. Many feel vitamin D is important in treating MS. Keep in mind the flu shot is a factor in neurological problems. Vitamin D has shown to be more effective in prevention of the flu.

http://www.youtube.com/watch?v=v7k0e3kp ... re=related

http://www.agoracosmopolitan.com/news/h ... /1013.html



http://www.naturalnews.com/003069.html

http://www.youtube.com/watch?v=yhUuf2QZd_E
want2bike
Family Elder
 
Posts: 742
Joined: Thu Sep 15, 2011 9:15 am

Re: hi i'm a newbie

Postby ljelome » Fri Feb 01, 2013 10:49 pm

Hi! i don't have the vit D level's test available here. Coz u know my country, Indonesia, is very sunny. We have so much sunlight enough to produce vit D. So a test of vit D level here is uncommon.

Yes, i might have a low vit D level coz i have most of my time indoor everyday..start working in the early morning n coming back home when its already night. Don't much time for sunbathing..hohoho. Yeah i do know there's a relationship between vit D known as an immnune system regulator and autoimmune disease.

Now that i have resign from my workplace, i do have time to enjoy the warmth of the morning sunlight everyday... :-D (except when it's rain, now it's been a rainy days here :-|).

Thank you for your information again...

Stay healthy n God bless u.

Warm regards,
Linda
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
Family Elder
 
Posts: 126
Joined: Fri Jan 25, 2013 9:46 pm
Location: Jakarta, Indonesia

Re: hi i'm a newbie

Postby jgkarob » Mon Feb 04, 2013 11:22 am

Hi Linda,
I spent many years in Jakarta. Is Rebif licensed there now?
It wasn't licensed when I was there and we had to buy it in Singapore and bring it back with us.
There are excellent neurologists in Singapore and world-class hospitals. It's lonely though, as MS is very rare.
Rebif was very expensive. Your family must be very wealthy to pay for it.
I've been on Rebif since 2000 and still take it now. It has reduced my relapse rate to 1 in every 3 years. Before Rebif, I had relapses every three months.
I hope you find help with diet. My MS has become stable since 2006, when I eliminated gluten and pulses from my diet.
best wishes,
jg
ps - do you go to SOS Medika? There are some excellent doctors there.
User avatar
jgkarob
Family Elder
 
Posts: 118
Joined: Thu Apr 20, 2006 3:00 pm
Location: O Saviñao, Lugo, Galicia.

Re: hi i'm a newbie

Postby ljelome » Mon Feb 04, 2013 9:58 pm

Hi jgkarob!

Nice to know someone who knows where i live.
Yes, Rebif is now available here in Jakarta, but i don't think so for other CRAB's medicine.
Yes, Rebif is so expensive for me. No, i don't come from a wealthy family, but luckily i have a very wealthy Heavenly Father.hohoho. He provides me the money i need to pay for the Rebif i use through the company where i used to work and also the insurance company where i had apllied for it before i had MS.

I use Rebif just for a short term (1 to 8 months) everytime i got relapse. After stopping rebif, maybe it takes about 2-4 months till i got another relapse (from my experience). I don't want to use Rebif for along period of time, coz i don't see Rebif improving my symptomps significantly n also because of its negative long term-side effects. But i found steroid do help improving my symptomps, if only i was treated with it immediately after i noticed i had an attack.

I had tried to do healthy diet since June 2011 since i found out about BBD, i eliminate my daily milk consumption, reduce sugar, reduce gluten, reduce fried foods and junk foods (but i still can't eliminate those foods from my diet, i still eat it once a while). But i do eat more vegetables n fresh fruits now, i take omega 3-supplement daily, n bathing in the morning sun for vit D everyday if possible.

Yes, i might try to go to Singapore if God provides me the way. May i know, what hospital do you prefer and who is the doctor you know in Singapore who can help me? And where is SOS Medika located? Is it in Indonesia?

Thank you very much for your information. I hope u always stay healthy n GBU n family too.
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
Family Elder
 
Posts: 126
Joined: Fri Jan 25, 2013 9:46 pm
Location: Jakarta, Indonesia

Re: hi i'm a newbie

Postby jgkarob » Tue Feb 05, 2013 3:00 am

Hi Linda,
SOS Medika is in South Jakarta- it's quite expensive though, but the GPs are excellent.
I lived in Cilandak, which was lovely. I do miss the food - gorengan (bad for MS but yummy and durian!).
It's very lonely with MS in SE Asia. I was the only person as far as I could find, with MS and I'm from the UK.

I've been on Rebif for 12 years now and it's worked very well. My neurologist here in Spain reckons that it's stopped me from progressing, but I don't know - it's impossible to tell and I think it's down to good luck.
I follow a similar regime to you. Diet and sunshine and a stress-free life (as much as possible) and also exercise. Keeping stress levels down is very important.
I did love life in Jakarta. It seems horrid at first glance, the pollution and poverty and corruption, but the people have faith and that seems to help. It's a unique city.
very best wishes to you,
jg
User avatar
jgkarob
Family Elder
 
Posts: 118
Joined: Thu Apr 20, 2006 3:00 pm
Location: O Saviñao, Lugo, Galicia.

Re: hi i'm a newbie

Postby ljelome » Tue Feb 05, 2013 4:32 am

Hi jg! yes jakarta is a nice place to live, but now it is too crowded n traffic jam happens everyday. There's too many people here now. I dreamt to live somewhere else which less crowded.

Oh yeah there's a lot of good food here. I love durian n gorengan too. (oh how i miss them...hahaha)

I'm glad Rebif works for you very well n stop u from progressing. But i wonder does your symptomps all gone now w/ 12 yrs on Rebif?

Jg, u sure are a very tough person. i can't imagine how u could handle the side effects from 12 yrs of using Rebif. I can't stand the injection sites irritation for a longtime period of using Rebif. Do u have any negative side effect from using Rebif?

Thank you for sharing. All the best for you too.
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
Family Elder
 
Posts: 126
Joined: Fri Jan 25, 2013 9:46 pm
Location: Jakarta, Indonesia

Re: hi i'm a newbie

Postby jgkarob » Tue Feb 05, 2013 5:41 am

Hi Linda,
All Rebif is supposed to do is to slow down the relapse rate. It doesn't make the MS better, but stops the lesions from forming -in my case. It doesn't work that way for everyone.
I still have MS. I can't work a whole day, due to fatigue. LDN helped with my bladder.
I can't bend my knees due to extreme tightness of the lateral ligaments and this damage was done before diagnosis. I have very severe arthritis that affects my knees, as I have little or no cartilage/meniscus from the knee damage.
I still have injection site marks from each injection, but my liver is fine and I can walk well - but it is hard work staying fit.
I never had the flu-like side effects - I waited for them to start, but nothing happened! It was very surprising.

I miss Pasa Raya. We'd spend hours there. I also miss the seafood - we'd eat at Paddzi on Kemang Raya and I miss my musician friends.
Stay strong - I know how you are feeling. But the internet is a very good way of gaining support. xx
User avatar
jgkarob
Family Elder
 
Posts: 118
Joined: Thu Apr 20, 2006 3:00 pm
Location: O Saviñao, Lugo, Galicia.

Re: hi i'm a newbie

Postby ljelome » Tue Feb 05, 2013 9:39 pm

Hi Katrine!

I'm sorry to hear that u still have neurological damage from MS. I wish that u always stay healthy n no exacerbations ever happen again to you.

Thank you for sharing your story. If u miss Indonesia, u could always come back here.hohoho

Your story could be something in helping us all to find out what MS really is.

Best wishes for u n family. GBU.
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
Family Elder
 
Posts: 126
Joined: Fri Jan 25, 2013 9:46 pm
Location: Jakarta, Indonesia

Next

Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service