This Is MS Multiple Sclerosis Knowledge & Support Community

esta wrote:...
meanwhile...LDN?????????? i'm on 4.5mg. waiting to see if pain and spasms subside - its only been 2 weeks at this level when this started. i was advised they should.

I started with LDN 4,5 mg in November 2008. It is helping my fatigue. It does not help my nerve pain neither muscle stiffness.
Good luck!
Erika

rats, i was told the pain might subside in a couple of months.
a higher dose?
i'll tell you if mine goes away.
my dr's theory is based on a dr with ms who's on LDN and how he's doing.

Hello Erika, I am curious to know if the glycine works for you. I look around and it is pricy! I want to know if it works before investing... Once again you are leading the way for me. Thank you and I sincerely hope it helps you. You have a hard life, you are very courageous!

vivavie wrote:Hello Erika, I am curious to know if the glycine works for you. I look around and it is pricy! I want to know if it works before investing... Once again you are leading the way for me. Thank you and I sincerely hope it helps you. You have a hard life, you are very courageous!

Well, so far no changes. I take 1 teaspoon in the morning, 1 teaspoon for lunch and 1/2 teaspoon in the evening.
I will have to interrupt from tomorrow as I start with Sertraliniumchlorid. I have asked a doctor for the prescription. The drug was my choice.
I must test it as it was my idea and she is waiting for my reply. If it does not work or has bad side effects I will continue with Glycine again.
And maybe I am simply hopeless case
Erika

hi erika - if you do try l-glycine again, go to a dose that does stop the panic.
at the health store there is a much cheaper variety, i found out later, its fine also, just take more...its only an amino acid.
good luck with what you just got perscribed, i hope it works.

esta wrote:hi erika - if you do try l-glycine again, go to a dose that does stop the panic.
at the health store there is a much cheaper variety, i found out later, its fine also, just take more...its only an amino acid.
good luck with what you just got perscribed, i hope it works.

I still do not know which dose stops the panic. On the other hand big part of my fear is real.
I must smile now - I do not even think we have real health stores in Slovakia like you have in Canada or USA. I had to order it through i-herb. It came from California - Moreno Valley, I paid about 15 Euro.
They only sell it here for bodybuilders but it is mixed with other kind of things and it comes from California as well.
Like right now I am scared I will not be able to walk without fainting or vomiting to the bathroom to clean my teeth. And it is not the only thing...
But it is real because it happens to me.
On the other hand there is no war in my country and no earthquake.
Thank you, Esta!
Erika

My first MRI of brain and C-spine after the venoplasty in Poland.
Fast information: no progression, no changes, no active lesions, nothing is better

I had my MRI done about 10 days before the venoplasty - results: about 30 brain lesions, 3 C-spine lesions, corpus callosum atrophy, external type of brain atrophy. The lesions are infra and supratentioral.
I also have some minor problems with my C-spine.

After - I had my MRI done about 1 year and 4 months after the venoplasty.
No changes.

I think I had about 7 or 8 MRIs. This is the first time without progression.
I still take only LDN for my MS - if I may use this expression.

I do not have any new symptoms but I still feel my old and I am weaker.
World simply wants too much from me. People still think if I look normal I feel normal. They are very wrong. Moreover disabled people have it very difficult in this country.

Anyhow, it is good news for me.
Erika

Erika:

It gives me a great optimism, that you have no progression. That is the great result of Dr. Zamboni's MRIs that has yet to be duplicated; as in your case it is much more meaningful over a year's time.

I hope some way can be found to help you more. Dr. Haacke's work shows that it is often much more complicated than jugular and azygous involvement, while still being a vein issue. I have two friends in very bad shape and I wish they could be helped. I am not in fine condition myself, but the woman who used to be what Canadians call my PSW (personal care worker - it's not that bad, they only spend about an hour with you) said I was her only semi ambulatory 'MS' patient. The rest were bedridden. It is these hard cases who need the most attention by the scientists, IMO. We have only begun to fight.

Anyway, great news. "No change" can be good change if you are used to bad change.

1 year and 5 months after
- I am getting worse, not fast but I am - to say it exactly I am getting weaker, especially my arms
- I feel like I was SPMS but I do not know where is the exact border between RRMS and SPMS
- My neck is stiffed and it is painful
- Even my spastic back hurts quite a lot - on the right side only
Sorry, no more energy for typing
Erika

ErikaSlovakia wrote: - I am getting worse, not fast but I am - to say it exactly I am getting weaker, especially my arms

I'm similar to you Erika. It's frustrating, for sure. I'm especially bad at night. However, I know from my procedures that there is a connection.

Hang in there, Erika. You are a champion.

Brainteaser wrote:

ErikaSlovakia wrote: - I am getting worse, not fast but I am - to say it exactly I am getting weaker, especially my arms

I'm similar to you Erika. It's frustrating, for sure. I'm especially bad at night. However, I know from my procedures that there is a connection.

Hang in there, Erika. You are a champion.

I am not frustrated or sad or anything negative. I wanted to give my MS body to angiologists to start the job on human patients. I did it, so I have what I wanted. I know Rome was not built in one day...
I take all my drugs before I go to sleep and my nights are usually OK.
Mornings are very bad, low air pressure is a real nightmare and hot weather is a horror - it is coming. This summer will be very hot, like in 2007. We will reach 40C, which is about 105F plus humidity, plus no AC.
Just do not tell me to enjoy life and that I look good - it makes me very aggressive
Erika

I am very sorry Erika. I do not know what to say. María is doing well so far. Un fuerte abrazo,
Pepe y María.

I am not frustrated or sad or anything negative. I wanted to give my MS body to angiologists to start the job on human patients. I did it, so I have what I wanted. I know Rome was not built in one day... Rolling Eyes

That is one of the bravest things I have ever heard said in my 57 years. Thank you. To donate your 'MS' body to science while you are still in it... it takes my breath away. You will be rewarded big-time in this life, if there is any justice.

Who wants to build Rome? I would settle for a few sand-castles right about now.

Keep well, for someone who does not enjoy life or look fine

1eye wrote:if there is any justice

Is there?

sou

I forgot to say that my nights are not that good. I often wake up at 4 am and cannot fall asleep again. So I sleep only 4 hours which is really not enough. I feel miserable during the day but I usually sleep another 4 or 5 hours during the day.
Like now it is 5:46. So another miserable day in front of me
Erika