Hallo everyone!

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Hallo everyone!

Postby eve » Wed Jan 06, 2010 12:00 am

hiya, let me start by thanking you all for making this forum such an interesting read. I am Dutch and very excited about the CCSVI developments. I have been diagnosed with MS in 2002 but have had it for much longer. (so this will be a read - just saying.. ;-) )

In '78 - when I was 10 - my left arm just stopped working for a number of days. It did not hurt, I had not injured it, it just wouldn't move. After that I kept tripping all the time and it turned out I had a weak left ankle- all of a sudden. During puberty I always was way more tired then my classmates and PE was really hard, I would be exhausted afterwards eventhough I looked like I was in great shape.

In '89 I went to my GP with the following complaints : extreme fatigue, stiff legs and very dizzy. (I had her look it up after my diagnosis, coz I was SURE I had had it for so much longer :-D). They ran some bloodtests and I had a bloodpressure of 90/60 and nothing else showed up. I was too tired to demand any further action as all doctors told me there were no physical issues it must be mentally....... Granted, I did have a bit of a rough childhood... Eventually it passed and I just went on.

Had a lot of trouble keeping the job, I could not work 40 hrs a week, I had to take sickleave every couple of weeks - needless to say this caused tensions with my employer. In the end I went to working 4 days a week as I just could not do more.

In '96 my son was born and I had a sensation while breastfeeding which I now know is L'Hermitte's. I did not even go to my GP at that time because by then I was so used to having weird complaints that would eventually pass that I did not bother. They just wrot it off as 'mental'. Which was the weirdest thing - most of my friends consider me very stable, do not panick easily, 'strong'. But as soon as I entered a doctor's office they saw me as an unstable person....

I cannot count the amount of times I have been checked for lack of iron (only once, during pregnancy) and urinary infections (also only once) and well being tired... that was my middle name. Eppstein-Barr, that has been checked a number of times too, never had it.

In 2002, I was a single mum by that time and only just getting by on a 28hrs a week job I went to bed 'healthy' albeit very tired and I woke up with double vision and muscle weakness on my whole left side.
Finally I got a diagnosis. When my neurologist told me I tought he was mad, mistaken. I went home and read about MS and everything clicked.

Since then I have had a number of rough years but the last 3,4 I am doing pretty good, I am not complaining. No major upsets and a long way up but progressing daily. Fingers crossed it is.

I have not used any medication in those last years as I felt the solution was not in it for me. CCSVI however makes so much sense to me that it has gotten me excited. And as you seem to be the best source on the web, I come here daily so it only seemed proper to introduce myself. Sorry for the long story - but that's what it is with my MS - a long story.
Last edited by eve on Fri Jan 08, 2010 11:11 pm, edited 1 time in total.
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Postby jimmylegs » Wed Jan 06, 2010 5:15 am

welcome eve, thank you for your story :) welcome to TIMS!
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Postby CRHInv » Thu Jan 07, 2010 11:21 am

Welcome! I hope you find as much information and comfort here as I have. This is a great place to be, nice and smart people.
Thanks for sharing your story!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby eve » Fri Jan 08, 2010 1:27 am

Thank you for your kind words, I sure intend to read this forum from start to finish. And by the time I'm done I hope CCSVI treatment will be available to all. ;-)
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Postby CRHInv » Fri Jan 08, 2010 9:11 am

I sure intend to read this forum from start to finish. And by the time I'm done I hope CCSVI treatment will be available to all.


I agree! I hope when you are done it is available to all, and it would be great if you were a fast reader!!!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby eve » Fri Jan 08, 2010 10:39 pm

It just so happens I am! I'll do my utmost best. :D

Getting impatient now too, why is it all moving so slow? (rhetorical question, I know some things need to be checked and double checked) Even een few months are a long wait now while I know it will be a number of years before CCSVI will be mainstream. Aaaaah..... patience is a virtue.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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