Erika`s procedure in Poland

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Dec 13, 2009 3:21 am

How quickly were you progressing before the procedure? Did you notice that you were getting worse in an obvious way or was it subtle?

Good question. It was different after taking LDN. I started with it last November. Before I had attacks twice a year. I never recoverd fully after any attack. Even I was 5 days on cortison in hospital it took me 3-4 months to feel better.

Since I am on LDN - I had no attacks, no worsening. I even got better after starting LDN - not only fatigue was better but even walking.
I consider my status for success.
I can do more than the year before despite of beeing on LDN.
Like I am so happy I do not have the stupid fast heart beating - it was really terrible. I thought I was close to heart attack 3 times a day!
What I still do not like is the stupid feeling in my head. I think it is combination of more problems. The vision is a problem. My right eye focuses normal. The left eye focuses slowlier - of course I have stupid feeling.
I do not think Clexane causes me any problems.
Well, I have 12 attacks behind me so I am not surprised.
The fatigue was my biggest problem - it is so much better now.
I want to be honest. I do not want to tell you only good things. You should know the reality. I am also sure everybody is sooo different.
Erika

Ernst · Post by **Ernst** » Sun Dec 13, 2009 3:26 am

Erika, do you take vitamin-d or have you checked 25ohd levels? Im just curious, and also concerned with 25ohd levels with health/disease.

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Dec 13, 2009 4:12 am

Ernst wrote:Erika, do you take vitamin-d or have you checked 25ohd levels? Im just curious, and also concerned with 25ohd levels with health/disease.

I used to take 3000 mg 3 omega D vitamin a day (Fish oil).
As I save money on every place I take only 1000 mg of day.
I have not checked 25ohd levels.
I am careful with doctors here. They usually look like this

at me.
They are not negative neither angry just maybe surprised.
Erika

crocky · Post by **crocky** » Sun Dec 13, 2009 7:06 am

Hi Ericka

So glad to hear that your fatigue is a bit better now - really appreciate all your updates, so keep them coming (without exhausting yourself too much)
love Suzanne

costumenastional · Post by **costumenastional** » Sun Dec 13, 2009 7:56 am

Hi.
I just wnated to express my gratitude to Erika. I hope you realise how important is for you to keep posting your updates whenever possible as we are all looking forward to be tested for ccsvi and go on from thereon.

Keep up the good work and being honest.

Spiros.

ozarkcanoer · Post by **ozarkcanoer** » Sun Dec 13, 2009 8:46 am

Erica said :

"The weather here was awful. I was also maybe simply tired after many long days at the internet."

"I am still often scared but not so much as before."

Erica,

I worry that I spend way to much time on the internet. Especially since I discovered CCSVI. I think the screen glare wears out my eyes.

Our weather here is gray and cold. Some sunshine would help !!!

Also, about being scared, me too. I understand the constant stress of being scared. (((Erica)))

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Dec 13, 2009 8:54 am

ozarkcanoer wrote: Some sunshine would help !!!

Oh yes! I hate this period of year in my country. December, January and February are really ugly here. Moreover it is cold so I do not go often outside for a walk. It is dark couple of minutes after 4 pm.
When I was 11 I wanted to move to California because of this

It is like to live in a cave without seeing sun.
Erika

Robnl · Post by **Robnl** » Sun Dec 13, 2009 11:13 am

Erika,

Well, your body is a bit in an inactive state in the dark winter, suppose you will notice more improvements when the days get longer and the temperature rises

Write your health insurance that you need a medical holiday to South America or something like that

Robert

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Dec 13, 2009 11:36 am

Robnl wrote: Write your health insurance that you need a medical holiday to South America or something like that

Robert

Oh, yes, yes, yes!!!

I spent winter 2002-2003 working on a cruise ship in Brazil, Urugay and Argentina. It was nice except of too much work and my MS symptoms.
I knew it was last time for me working on a cruise ship.
But the weather was nice! Well, not only the weather...
Erika

redmoon218 · Post by **redmoon218** » Mon Dec 21, 2009 3:11 pm

Erika where are u??? I hope you are ok

ErikaSlovakia · Post by **ErikaSlovakia** » Tue Dec 22, 2009 12:34 am

redmoon218 wrote:Erika where are u??? I hope you are ok

Do not worry

I am fine. Tomorrow is my day 50 so I wanted to post a report tomorrow.
I feel the same - not better but not worse.
No pain at all regarding my stent. I still have 11 Clexane injections.
I only have some light bruises on my belly. I do not feel any problems regarding Clexane.
I had a little problem couple of days ago. My BP was too low. Only 100/60. It is too low for me. I made a little mistake. I have not been checking my BP just taking 5 mg of Lisinopril a day. So I stopped Lisinopril. I do not know exactly why is my BP normal again. I do not have any stress, maybe that is the reason.
All the improvement from the beginning remained.
Erika

redmoon218 · Post by **redmoon218** » Wed Dec 23, 2009 4:18 pm

Thanks Good for that Erika,I was really worried about u after what we have hared

about the complications for some patients who have done the librations procedure . I want to ask do u still taking MS treatment?

ErikaSlovakia · Post by **ErikaSlovakia** » Fri Dec 25, 2009 4:12 am

redmoon218 wrote: Thanks Good for that Erika,I was really worried about u after what we have hared about the complications for some patients who have done the librations procedure . I want to ask do u still taking MS treatment?

Hi,
well I do not understand exactly what you mean under "MS treatment".
I have never been on DMD. I only started to take LDN last November and I still taki it.
I take vitamin B,E and D. I take 900 mg of carbamazepin a day because of my central neuropathic pain in my right arm.
I also take 100 mg of PK-Merz per day.
Sometimes I take 100 mg of Vigil (Modafinilum).
I sleep on inclined bed as well.
Erika

redmoon218 · Post by **redmoon218** » Fri Jan 01, 2010 6:03 pm

Happy new year Erika
Yes that was what I meant, I thought you was taking interferon or tysabri.
I have anther question about the stent. Is the decision for putting a stent was made after the MRV and other examination or during the operation?

I'm paling to do the operation but, I prefer to not have any stent

ErikaSlovakia · Post by **ErikaSlovakia** » Sat Jan 02, 2010 3:24 am

redmoon218 wrote:Happy new year Erika
Yes that was what I meant, I thought you was taking interferon or tysabri.
I have anther question about the stent. Is the decision for putting a stent was made after the MRV and other examination or during the operation?

I'm paling to do the operation but, I prefer to not have any stent

The decision/recommendation from Dr. Simka was made after MRV in Zabrze so before the operation.
I knew Dr. Zamboni had about 50% restenosis in his trial. This was what Dr. Simka told me as well. He did not force me to have a stent just explained me what is better in my case and why. I also wanted a stent so I was not against this idea. I did not want to risk another attack and another procedure.
Of course each patient is different. I also think there will be better solution in 3 years. I just did not want to wait. There are 12 attacks behind me, my EDSS is 5,5. I was scared to become SPMS. I was paralyzed when I was 14, I was paralyzed again when I was 17. My MS symptoms are here for sure since 1996.
I think you have a choice. I also think doctors will inform you about advantages and disadvantages.
Of course I can not know what is better for you.
Erika

This Is MS Multiple Sclerosis Knowledge & Support Community

Erika`s procedure in Poland

your reports