HELP PLEASE. HOW TO TREAT THIS DECEASE

[zorro8081980]

i have MS/ was diagnosed in february 2015/ had three serious relapses in 10 months.
i live in Ukraine. the country does NOT provide us with special treatment. no copaxon no rebif etc.
to buy such a medicine is completely impossible for me. i cant work because of my decease, and my income is about 100 US dollars a month.
i have the only possibility - to take a part in clinical trials, thats all i can((

please give me an advice about what to do in such a situation
1 does it worth it to take part in clinical trials?
2 do you know any natural means to slow down the MS? is it possible to combine clinical trials and natural therapy?
3 is it possible to find any grant or organization that can provide me with special medicine? i know that in developed countries authorities provide us with betaferon or smth similar, but i am just a citizen of Ukraine ((

[euphoniaa]

i have MS/ was diagnosed in february 2015/ had three serious relapses in 10 months.
i live in Ukraine. the country does NOT provide us with special treatment. no copaxon no rebif etc.
to buy such a medicine is completely impossible for me. i cant work because of my decease, and my income is about 100 US dollars a month.
i have the only possibility - to take a part in clinical trials, thats all i can((

please give me an advice about what to do in such a situation
1 does it worth it to take part in clinical trials?
2 do you know any natural means to slow down the MS? is it possible to combine clinical trials and natural therapy?
3 is it possible to find any grant or organization that can provide me with special medicine? i know that in developed countries authorities provide us with betaferon or smth similar, but i am just a citizen of Ukraine ((

Hi zorro, and welcome. I'm sorry to hear your situation: already had 3 relapses, very few options for treatment.

I don't have much information for you (I have no experience with MS drugs myself), but wanted to say that I deleted your duplicate post in another part of the forum, but kept this one in the main, General forum where I hope that some of our many informed members will stop in with good suggestions.

I wish you well!

[zorro8081980]

thank you .
it s the only hope for me - to get any advice from you and people who have the same decease as me (

[euphoniaa]

thank you .
it s the only hope for me - to get any advice from you and people who have the same decease as me (

There is a lot of information and ideas here in the many forums, so be sure to explore them and read. Keep in mind that there is not one single treatment that helps everyone -- and there is NO cure for MS. Each of us seems to have a unique, individual disease with different symptoms and different presentation.

What works for one person often doesn't work at all for the next person, but here at TiMS the forum is open to lots of different approaches to treatment. Keep in mind that we're not medical professionals and some of the ideas expressed here are completely new and untried.

There are also separate forums for each of the mainstream MS meds with people's experiences. Also, natural and alternative approaches have forums as well. Please keep asking questions -- but know that often our answers are only our opinions.

Welcome again.

[Scott1]

Hi Zorro,

I hope we can all put our brains together to come up with some suggestions for you.
As you have so little money to live on each day and very little medical help it looks to me that food is the best idea.

Foods can provide a lot very helpful medication for not a great cost.
My suggestion are as follows and they are firstly about diet.
1) eat a lot of dark green leafy vegetables -that gives you many vitamins, minerals and nitrates
2)eat a lot of beets, particularly beetroot (include the leaves) that will help you dilate the blood vessels
3)eat a lot of offal (kidney, liver , brain, heart) that will give you a lot of coenzyme Q10 which will help you make energy - muscle meat is ok, offal is better
4) make a broth out of bones and make it part of your daily diet that will give you many trace elements
5) drink lemon juice in the morning with a bit of water this will help to make your PH less acidic

Stay away from dairy, gluten and pulses as they can cause inflammation. If you do eat anything of these groups then make it a natural yoghurt. Eat as much fruit as you like but preferably make it the type where the colour goes all the way through.

Now you also need to stretch your muscles as they will be tight. Is there someone who can massage you? Particularly the shoulders blades to open them and the hamstrings, calves and adductors?

You need to exercise the legs and the psoas muscle. Find some stairs and practice walking up them without holding on. If you need to hold on, do so but climb some stairs with a straight back. Then try coming down again without holding on. Make sure someone is there with you in case you become a bit unstable.
Have someone walk with you around the block. Let them criticise the way you walk and try to lift your feet and walk as normally as possible. These are all exercises and can be hard (I know).

There are many people who do not use drugs and for them a natural approach does help.
I'm sure others will have cheap ideas that can help you.

Regards,

[zorro8081980]

Scott, thank you
i really wonder - why dont people you talked about use drugs?

the doctor have said me 2 days ago that clinical trials is the only hope and if i well not get it then i ll end up in the bed soon enough(

??

[zen2010]

Hi Zorro,

You may want to check the link below:
http://www.geneuro.com/en/news/press_articles.php

"The study plans to enroll 260 patients in 68 clinical centers in the European Union and Eastern Europe"

I don't know whether Ukraine is in the list or not but you can contact them.

[ElliotB]

Sorry to hear you have not been feeling well. Hopefully you will be feeling better very soon.

While there is no now known cure, there are things you can do for yourself that can help you feel better, with regard to diet, exercise, supplements and lifestyle change (elimination of all stresses).

Are you following a diet of any kind? Do you exercise? Are you taking any supplements? I am happy to make some general recommendations if you like.

Do you have access to MS books?

[lyndacarol]

it s the only hope for me - to get any advice from you and people who have the same decease as me (

Welcome to ThisIsMS, zorro8081980. We are glad that you found us; we cannot offer professional advice, but we gladly share our opinions.

You live in Ukraine, but you speak English very well. I do not know much about your country, but it is not easy to have MS anywhere in the world. I am curious to know how your doctors diagnosed you with MS. Were lots of blood tests done? Did your doctors test your vitamin B12 level, your vitamin D level, your thyroid gland? What are your symptoms?

It is unfortunate that the approved MS drugs are not available for you, but do not despair – I have used Betaseron, then Avonex, and then Copaxone for a total of 10 years; I do not believe that these drugs helped me at all. I have chosen not to use any MS drugs for the last 10 years. The cause of MS is unknown and, in my opinion, no effective treatment can be developed until the cause is found.

You had mentioned clinical trials. Please be aware that in a clinical trial half of the participants are given the drug being tested… the other half is given a placebo (an inactive substance like a "sugar pill") – no one knows which group he is in until the trial is finished.

Even if you were able to take part in a clinical trial, there is a 50-50 chance of being in the group that does not receive the drug being tested .

I agree with Scott1 that food can be more important than medication. Eat a healthy diet as much as possible – concentrate on nutritious food with many vitamins and minerals; eat "real" food.

Try to live the healthiest life that you can – don't smoke; don't drink alcoholic beverages; eat good food; get enough sleep; etc.

I do not agree with your doctors who said that clinical trials are your only hope. There are many people with the diagnosis of MS who live very normal lives with minimal difficulties. MS is uncertain – there is no way to know what the future holds. No doctor can predict how it will go for you.

[zorro8081980]

EliotB, i am glad that you worry
I eat any food including chocolate and sweets, but i dont smoke and dont drink alcohol
I didnt do any kind of exercises (
I dont take any supplements yet
No books on MS , I didnt even know where to look for(
And off course, i ll be happy to get any recomendations for my future struggle with MS )

[tzootsi]

One inexpensive natural thing to take is vitamin d3. Vitamin d is often very low in people with ms, especially if you don't get much sun. I am not a doctor, but from all that I've read people with ms should be taking at least 5,000 iu of vitamin d3 a day. Vitamin D may help control the immune system, and repair nerves. As others have mentioned, try to avoid dairy, and gluten (wheat, barley). Look at the mshope.com website.
Good luck to you! (I am part Ukranian!)

[zorro8081980]

lyndacarol, your opinion is better than any doctors prescription. Doctors are not `in our boat` and cant understand the things i feel....

Doctors diagnosed the MS basing on Magnetic resonance imaging results. in february they saw demyelinating. in july(second relapse) they have seen the progression of lesions / that signes plus my symptoms as numbing , loosing vision, bad coordination where taken into consideration. no tests of vitamin level, no special blood tests (just general test ), no thyroid gland test.

i am really interested - what was the reasons you dropped using drugs? bad side effects of that medication or what?

[Scott1]

Hi,

In your circumstances you may have to forget the tests. Some tests just let you chase numbers when what you want is all the things working as they should in your body. Try the food suggestion as a starting point. You say you eat anything so its offal in and sweets out. I will let you eat dark chocolate not milk chocolate. I want to know you eat fresh fruit in season rather than sweets.
Arguing with doctors who behave like bureaucrats just wastes energy. If we forget MS for a moment what does your health system offer for general illness? What did the general blood test actually say (not what did the doctor say the test said)?
Regards,

[zorro8081980]

What did the general blood test actually say (not what did the doctor say the test said)?

sorry, all the results of the blood test are in the medical documentation in clinic/ in a week i ll get them from there

[zorro8081980]

tzootsi, thanks
is 5000 IU ok for everyday use?