This forum is a place of hope

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

This forum is a place of hope

Postby sofia » Thu Apr 29, 2010 8:47 am

I am having the most hrrible day, I'm so dizzy I' can hardly walk. It also sometimes feel like I will fall when I am laying down. I have been thinking it must be something else, as it comes and goes, good days and bad days, can even change in mid day. I have come to terms with it now, that it is probably ms, and that made me feel even more depressed about it, as nothing can be done, and no symptom relieving meds works if its caused by ms.
Then I found this page, and learnt about ccsvi, it brought me some hope. I was lucky to get an early apointment in Bulgaria, a cancellation. I can see the end of it now, only two weeks to go. Counting the days, beliving I will come back feeling better. Reading the testemonies of everybody that has allready been liberated makes me smile. I'm greatful for the early apointment, I'm greaful I my parents are paying for me to go and have it done. I feel very fortunate for the oportunety to try to get healthier.
I know there is a chance it will not work, I know there is a chance I might not even have ccsiv, I know the results can be short term. But it is so good to have a bit of hope a bit of better prospects. It is what keeps me ticking now when I feel very ill, so nausious and dizzy that I sometimes throw up.
So thank you to everybody that has tried the operation, and spread the word to all of us. Creating a demand for such a procedure to be offered in private clinics whilest waiting for the formal results and for it to be standard treatment in more countries then Kuwait.
Let us focus on all the promising results, and also the fact that it is a low risk procedure. Other people take greater risks having their boobs enlarged, and their tummies tucked. Enoguh of my emotional postings, but its just so good to have a bit of hope, and not just doom and gloom and tysabri.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
User avatar
sofia
Family Elder
 
Posts: 161
Joined: Thu Mar 25, 2010 4:00 pm

Advertisement

Postby Mutley » Thu Apr 29, 2010 9:48 am

Hi Sofia,

So sorry that you don’t feel at all well. I Just wanted to wish you all the very best of luck with your trip to Bulgaria. Keep us all posted.

Best wishes.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 4:00 pm
Location: England

Postby Asher » Thu Apr 29, 2010 10:03 am

dear Sofia, for whatever it's worth, I fell horrible too today and place all my hope in the procedure some time this year. I identify with every word you write. I wish you all the best for your upcomig trip, and remember that even just stopping the beast in its tracks would be something to celebrate.
User avatar
Asher
Family Elder
 
Posts: 337
Joined: Sun Jan 31, 2010 4:00 pm

Postby zinamaria » Thu Apr 29, 2010 10:03 am

Hi Sofia,

I am also sorry to hear you are not well, and I have much hope that you can find some answers in Bulgaria. I want to also suggest immediately looking into dietary changes and vitamin/supplement support, just some things you can be doing while you wait for Bulgaria; also some meditation for tranquility of mind as I think you must be very scared. We have all been there and continue to go and come.
Take good care of yourself and keep us posted. We are all here to support you. Try to stay positive.

Peace,
Zina
User avatar
zinamaria
Family Elder
 
Posts: 296
Joined: Fri Dec 04, 2009 4:00 pm

Postby sofia » Thu Apr 29, 2010 10:30 am

Thank you all. Its nice to be able to"talk" to others that really understand. Even closest family does not understand, as i look exactly the same as I did at the weekend, when having a good day, dashing all over the place. I suppose what makes it the hardes for me is the kids, they are 2 and 4, and they don't understand at all.
I'm normally positive about things, just sometimes I get all emotional. So thanks for support you guys :-)
Hope we will all be feeling better soon. Even if treatment works, there is some breaks with MS, the good spells inbetween all the bad. People with some other diseases have no break at all.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
User avatar
sofia
Family Elder
 
Posts: 161
Joined: Thu Mar 25, 2010 4:00 pm

Postby Cece » Thu Apr 29, 2010 12:08 pm

Taking care of kids can be exhausting even for people without m.s. I have a two-year-old and a four-year-old too and, yeah, they don't get it. It gets easier as the kids get older...my seven-year-old gets it and is very kind to me...but hopefully as you say treatment will make the difference.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9018
Joined: Mon Jan 04, 2010 4:00 pm

Postby Johnson » Thu Apr 29, 2010 3:16 pm

Sofia, I'm with you too.

I feel wretched every day now too. My three year old is fantastic, and I am so grateful for that. He's a Pisces, so is naturally empathetic. He says that I have a bug in my head. Yesterday I told him that I was going very soon to get the bug out, and that I would be a Da like he has never seen before. He asked me if I would look different, and I told him that I probably would. He was interested if I would look like someone else. I said that not really, but I might not need glasses any more, and that I probably wouldn't look so tired, and that I would probably gain weight and look like Superman again (laugh).

I can't wait to be able to lie on the grass with him and look at the stars. To ride my bike with him. And all of that...

Hang in there Sofia, going to Sofia.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

ccsvi

Postby caraboo » Thu Apr 29, 2010 3:27 pm

Hi sopia,


I know how you feel, i had loads of energy today but will be not worth a button the next few days. My daughter is nine but i remember when she was young, it was really hard, and i didnt get any help from family, never have.
Ive had ms for 23 yrs, from 16, now coming up for 39 on sat 1st. still stummblig about and cant wait to get to Bulgaria on 28th may. You take care and it will get easier and just think you might new person for the summer.


Caraboo
User avatar
caraboo
Family Member
 
Posts: 68
Joined: Thu Feb 25, 2010 4:00 pm
Location: scotland

Postby babiezuique » Thu Apr 29, 2010 4:46 pm

We are not alone in this... I know, I know... we are alone when we suffer like you said you where... I feel in those days so tired, my brain is so full of holes.... I did a MR of my brain one month ago... I'm a teacher of philosophy, and it is becoming almost impossible for me to teach, I'm 37 now and i always tought that the thing that would made me stop working would be my incapacity to walk and my fatigue... but now I'm realizing that it will be my brain!

I did not have children because i was afraid not to be able to take care of him...

Now... i'm waiting.. every day, every minute, every seconds...my ''liberation'' The only thing i want to talk about is CCSVI....all the other subljet are a brutal interuption in my favorite subject! CCSVI!

And I read you, all your messages... help me so much! Before ''this is ms'' i prefered to stay far from msers... But now i fell taht we can not only share our misery...but we also can hope together of better days...

you are so important for me... We will win this ''vietnam battle'' that we are facing now... The enemys are the neuros... our allied are Interventionist radiologist...

lets write to the one near your city!
Barbara
User avatar
babiezuique
Family Elder
 
Posts: 121
Joined: Mon Dec 07, 2009 4:00 pm
Location: Montreal

Postby Katie41 » Thu Apr 29, 2010 5:45 pm

Sofia,
I'm so sorry you are having such a bad time of it. Great that you have the procedure to look forward to. Even if there is a restenosis, chances are you will still have some improvements. I found it very helpful to write a detailed account of the procedure, how I felt before and after, and how each day for a few weeks went. That way the improvements weren't lost in the ups and downs.
Here's hoping you all have many more ups, than downs.
Katie41
User avatar
Katie41
Family Elder
 
Posts: 179
Joined: Sat Dec 05, 2009 4:00 pm
Location: Southern California

Postby ndwannabe » Thu Apr 29, 2010 7:52 pm

Sophia, you are one strong spirit I'll tell you!

May all your hopes be answered and all your struggles be behind you! Hoping with all my heart that your liberation will be a great success. Following your posts holding my breath, because I too will be going to Bulgaria in November/December.
User avatar
ndwannabe
Family Elder
 
Posts: 290
Joined: Sat Jan 02, 2010 4:00 pm
Location: SF Bay Area, CA

Postby elyse_peace » Thu Apr 29, 2010 9:43 pm

It is so true, that this is a place of hope, and of compassion. It feels to me like everyone here are my family, friends. I can hardly believe how quickly it has become very important to me how each of you is making out. It is good to be among those who understand.
Sofia, I'm glad you will be going to Bulgaria very soon. It's brutally hard to wait.
Barbara, I also have devolved to single-subject conversations, although perhaps I should say monologues. I'm just not that interested in anything else.
I wish everyone an end to the difficulty, the suffering of feeling so lousy.
I'm very tired, so the words are no longer flowing. Good night.
User avatar
elyse_peace
Family Elder
 
Posts: 173
Joined: Thu Dec 31, 2009 4:00 pm
Location: Putnam, NY

Postby babiezuique » Fri Apr 30, 2010 4:22 am

Good Morning every body! Have a nice friday, here in montreal it is very sunny this morning!

Take care;)
User avatar
babiezuique
Family Elder
 
Posts: 121
Joined: Mon Dec 07, 2009 4:00 pm
Location: Montreal

Postby sbr487 » Fri Apr 30, 2010 4:34 am

babiezuique wrote:Good Morning every body! Have a nice friday, here in montreal it is very sunny this morning!

Take care;)


Too late, my friday is almost ending ...
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby Cece » Fri Apr 30, 2010 7:28 am

elyse_peace wrote:Barbara, I also have devolved to single-subject conversations, although perhaps I should say monologues. I'm just not that interested in anything else.


I went through this back in January/February...I have been able to put my blown mind back together and have other conversations now, but it took a good two months...
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9018
Joined: Mon Jan 04, 2010 4:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service