Erika`s procedure in Poland

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Mon Mar 05, 2012 4:29 am

Jimmylegs thanks and congratulation!
My D3 level is 60,1 ng/ml!!!
It means your advice works. I started with only 7,09 ng/ml in March 2010. After taking 5000 IU per day of vitamin D it was 19,0 ng/ml. After taking 8000 IU it was only 22 ng/ml - pretty frustrating.
After taking 8000 IU per day, magnesium, calcium and Zinc it went finally to 60 ng/ml - great.
I do not feel any better. I still have the same problems as before like Fatigue, Frequent and strong Headache, big Sleep Disturbance, Heat Intolerance, Balance problems, problems with Vision, Brain Fog, Thinking/Reasoning difficulties, Thyroid Dysfunction, Dizziness etc.

Anyway, I think I could go to 5000 IU per day, still 25 mg of Zinc, 500 mg of Magnesium and 1000 mg of Calcium.
My Magnesium level is 0,91 nmol/l - our laboratory says it is OK.
My Calcium level is 2,43 nmol/l - again our laboratory says it is OK.
CRP is 0,1 mg/l - again our laboratory says it is OK.

Jimmylegs, I will also send you PM.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Erika`s procedure in Poland

Postby jimmylegs » Mon Mar 05, 2012 4:38 pm

erika! :D i replied to your pm.

that sucks that you still have all these symptoms. your d3 and magnesium levels look good. same with calcium. it probably would not hurt to have a closer look at the cal:mag ratio and see if there's any tweaking that can be done there.

zinc warrants a closer look - as mentioned in the pm, if i recall correctly a zinc test won't be feasible, right? perhaps we can use serum uric acid as an indicator instead, would you be able to get that done as a backup plan?

hope we can find something to get you feeling better!
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Tue Mar 06, 2012 3:13 pm

jimmylegs wrote:erika! :D i replied to your pm.

that sucks that you still have all these symptoms. your d3 and magnesium levels look good. same with calcium. it probably would not hurt to have a closer look at the cal:mag ratio and see if there's any tweaking that can be done there.

zinc warrants a closer look - as mentioned in the pm, if i recall correctly a zinc test won't be feasible, right? perhaps we can use serum uric acid as an indicator instead, would you be able to get that done as a backup plan?

hope we can find something to get you feeling better!

Yes, I saw it only quickly. I couldn´t answer as I have often stress in my family and had to go to the police to ask for help. I will explain you via PM.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Location: Slovakia, Europe

Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Sat Feb 22, 2014 4:40 am

Dear ladies,
I would like to ask you for an advice, please!
I am 41 years old, no pregnancy, couple of years on progesterone - non stop - it means I do not get my period. (My MS was getting so much worse because of very painful period.)
For about 3 months I have problems with hot flushes, sweating, palpitations, and constant dizziness. My MS is getting worse as I have strong heat intolerance.
I have informed my gynecologist about Trimesta...
She just doesn´t know what kind of tests to do. My estrogen was 380 pmol/l last month. Last week it was only 298 pmol/l. Laboratories in Slovakia do estriol test only for pregnant women.
I started to take estriol 1 mg 3 days ago. My doctor just really doesn't know what tests to do and what should be the reference range for estriol.
I am desperate and doesn´t feel good. I am very scared.
What should I do?
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Re: Erika`s procedure in Poland

Postby LR1234 » Sun Feb 23, 2014 2:38 am

Hi Erika,
I have endometriosis so painful periods and cysts also make my ms worse.
Currently I'm on provera but I'm planning to take this one...... http://qlaira.org It's a more natural form of oestrogen that the levels are changed to mimic cycle it's mixed with synthetic progesterone at different levels too. I use a progesterone creme 20mg atm to help with symptoms as well.
I'm not planning on changing over to qlaira for a couple of months yet as I've only been on provera 2 months but will do soon.
I have no idea what e2 levels (estrogen) should be in non pregnant women.

L x
Last edited by LR1234 on Sun Feb 23, 2014 2:35 pm, edited 1 time in total.
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Re: Erika`s procedure in Poland

Postby Cece » Sun Feb 23, 2014 8:50 am

I have no advice but I hope you feel better.

I googled the amounts of estriol used in a clinical trial on estriol in MS patients. I have no idea if this is helpful or what these amounts mean.
Experimental: Group A: Estriol
Standard MS Treatment + Estriol
Drug: estriol
4 capsules of 2 mg (total of 8 mg) PO QD

Other Name: Synapause
Drug: Norethindrone
Starting at month 6, and at Months 9 and 12: subjects who are on estriol (Group A) take 0.7 mg PO QD for 2 weeks.

Other Name: Progestin

http://clinicaltrials.gov/show/NCT01466114

And here's a published abstract on estriol in MS patients. http://www.ncbi.nlm.nih.gov/pubmed/12325070
As compared with pretreatment baseline, relapsing remitting patients treated with oral estriol (8 mg/day) demonstrated significant decreases in delayed type hypersensitivity responses to tetanus, interferon-gamma levels in peripheral blood mononuclear cells, and gadolinium enhancing lesion numbers and volumes on monthly cerebral magnetic resonance images. When estriol treatment was stopped, enhancing lesions increased to pretreatment levels.
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Mon Feb 24, 2014 7:52 am

Thanks L, thank you Cece!
I am very weak and feel very bad. Especially the hot flashes are "boiling" my brain and I constantly feel to faint.
I hope to solve the problem soon. I went 9 x to my gyno since January. She is only scared I get cancer from HRT and die. I have the symptoms since last December.
Well, I have only black humor on my mind so I will not post my comment...
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Re: Erika`s procedure in Poland

Postby sasknick » Fri Mar 07, 2014 6:22 pm

Hello Erika,

I use to spend a lot of time on thisisms and since my CCSVI treatment in Poland in 2010 I haven't been here much. I recognized your name right away - I believe we exchanged a few messages back then. Congrats to you on your recent procedure. I desperately want to go back to Poland ( I am from Canada) and repeat the procedure - both of my jugulars were completely blocked. I am just starting to research again but was very interested in the fact that you got stents? Is this more standard now because it was rare then? I am so interested in stents - am quite sure I have restenosis and unfortunately cannot easily get tested here in Canada. When you"re up for could you share any info?

Warm Regards,

Tricia
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Re: Erika`s procedure in Poland

Postby NHE » Sat Mar 08, 2014 6:22 am

sasknick wrote:I use to spend a lot of time on thisisms and since my CCSVI treatment in Poland in 2010 I haven't been here much. I recognized your name right away - I believe we exchanged a few messages back then. Congrats to you on your recent procedure. I desperately want to go back to Poland ( I am from Canada) and repeat the procedure - both of my jugulars were completely blocked. I am just starting to research again but was very interested in the fact that you got stents? Is this more standard now because it was rare then? I am so interested in stents - am quite sure I have restenosis and unfortunately cannot easily get tested here in Canada. When you"re up for could you share any info?


You might want to look into Dr. Sclafani in New York. Not only would it be considerably closer for you, but Dr. Sclafani uses intravascular ultra sound (IVUS) which he has found to be indispensible for successfully treating CCSVI.
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Mon Mar 10, 2014 6:00 am

sasknick wrote:Hello Erika,

I use to spend a lot of time on thisisms and since my CCSVI treatment in Poland in 2010 I haven't been here much. I recognized your name right away - I believe we exchanged a few messages back then. Congrats to you on your recent procedure. I desperately want to go back to Poland ( I am from Canada) and repeat the procedure - both of my jugulars were completely blocked. I am just starting to research again but was very interested in the fact that you got stents? Is this more standard now because it was rare then? I am so interested in stents - am quite sure I have restenosis and unfortunately cannot easily get tested here in Canada. When you"re up for could you share any info?

Warm Regards,

Tricia

Hi Tricia!
I have one stent in my left jugular vein, just above the collar bone. My valves were inverted so I had no flow. My flow now is still very slow. I was only a second patient in Katowice/Poland. It is true they use less stents these days.
I had check up venography in 2011. Doppler said the vein was completely occluded but the venography looked OK so no other treatment was done. I had a follow-up in Slovakia and it still shows very slow flow and reflux.
As you could read I have problems with my womb/hormones and nerve pain in both arms. I am not able to do much because of the side affects of the drugs and pain.
Anyway, I would do it again - I mean my CCSVI treatment. My stent looks just like new - no change, it is OK.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Mon Nov 03, 2014 7:14 am

5 years later.

I felt better 33 days after the procedure. I got 1 stent in my left jugular vein. I have never had any problems with the stent.
I´ve been getting slowly worse and worse. I suffer from terrible nerve pain in both arms. I get opiates but it has side affects and is not strong enough against the pain. I feel dizzy and have strong brain fog. I still can walk with one cane.
Marijuana would help me but it is illegal in my country and Sativex is not available here.
Anyhow I would do the CCSVI procedure again if I were in situation 5 years ago or now.
Sorry, I´m too week to type more.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

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