New from New Zealand - frustrated and tearful

New members should feel free to introduce themselves here

New from New Zealand - frustrated and tearful

Postby Ezza » Sun Aug 05, 2012 2:06 pm

Hi all

Let me introduce myself I am a 41 year old woman diagnosed with relapsing MS in January this year. this was after years of issues and being told my symptoms were because I was highly strung. Reading other people's stories I feel like I did have great support late last year from my primary care doctor and the others I saw to get diagnosis. 7 months later I feel like I've been abandoned by my neurologist as NZ has very strict rules on who can go on any treatments until I've had 3 distinct relapses in 12 months.

I have had really painful and blurry vision on and off since early April and finally saw the neuroligist today who said I was the same and I'd have to put up with it. I work in ITand my primary relaxing tool was reading - this is severely impacting my quality of life but I have to suck it up. I am so angry and frustrated and I know I am much better than I was 8 months ago but why doesn't the medical profession actually listen to their patients. Anyway I just wanted to reach out to others that understand how scary and frustrating this all is. rant over - I am generally a positive and happy person - honest :?
Last edited by Ezza on Mon Aug 06, 2012 12:43 am, edited 1 time in total.
Ezza
Newbie
 
Posts: 5
Joined: Sun Aug 05, 2012 1:48 pm

Advertisement

Re: New from New Zealand - frustrated and tearful

Postby esta » Sun Aug 05, 2012 2:34 pm

Hi there, just wanted to tell you that I started reading again, by using the iPad, along with greatly magnified glasses. It's such a thrill, I know that reading means a great deal and I'm so happy I found this. It seems to be the contrast along with the many ways of making the print larger. I can't read the newspaper or regular books so this has been great for me. Good luck
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 3:00 pm
Location: Summerland. BC Canada

Re: New from New Zealand - frustrated and tearful

Postby lyndacarol » Sun Aug 05, 2012 5:57 pm

Welcome to ThisIsMS, Ezza. We do understand how scary and frustrating this disease is. Please reach out to us with questions or rantings anytime – we are here to help each other.
User avatar
lyndacarol
Family Elder
 
Posts: 2386
Joined: Thu Dec 22, 2005 3:00 pm

Re: New from New Zealand - frustrated and tearful

Postby Ezza » Sun Aug 05, 2012 11:51 pm

Oops that should be 3 relapses in 12 months. My optometrist said my eyes were showing rapid deterioration and had got twice as bad in 6 months. Scary thing is the new lenses only worked for two days hence my frustration with neurologist today. I suppose so I go back to the optometrist. Perhaps I need access to a swag of glasses at difference strengths. Wouldn't that be hard case?

Thanks Family Elder - yes I have my work screen on magnify & large font. Every little tip helps doesn't which is why I am here. I've also joined up Audible to get 'talking' books to help.
Ezza
Newbie
 
Posts: 5
Joined: Sun Aug 05, 2012 1:48 pm

Re: New from New Zealand - frustrated and tearful

Postby want2bike » Mon Aug 06, 2012 3:52 am

Might take a look at Dr. Swank's diet. It has shown success in treating MS.
want2bike
Family Elder
 
Posts: 742
Joined: Thu Sep 15, 2011 8:15 am


Re: New from New Zealand - frustrated and tearful

Postby Ezza » Tue Aug 07, 2012 12:01 am

Thanks for the advice - I have been following paleo with auto immune which has been amazing in terms of helping with fatique and weight reduction. But the eye thing and associated issues with comprehension is still an issue but who knows it may improve over time and dissipate. It's more the frustration with the medical profession and their inhuman approach to care. I also have to either stay with this neurologist or go private which I think may be worth it to get a decent level of care.

It's fantastic finding this site though - nice I know there are other folk out there that care and can give great realistic advice :)
Ezza
Newbie
 
Posts: 5
Joined: Sun Aug 05, 2012 1:48 pm

Re: New from New Zealand - frustrated and tearful

Postby jimmylegs » Tue Aug 07, 2012 5:57 am

hi ezza, can you tell us exactly what is the nature of the deterioration in your eyes, according to the doctor? i might be able to find some helpful info, if i know exactly what the problem is.
jimmylegs
Volunteer Moderator
 
Posts: 9153
Joined: Sat Mar 11, 2006 3:00 pm

Re: New from New Zealand - frustrated and tearful

Postby Ezza » Thu Aug 09, 2012 8:53 pm

Hi again - sorry to take so long to reply but I've had a few days of tiredness & pain. My eye issues are generally blurriness particularly with computer screens & reading. It seems to take a few hours for my eyes to adjust to this & sometimes they don't adjust at all. Glasses haven't helped I've been to the optometrist twice in 6 months. The worst of it was a few months ago where my eyes felt like there was gravel in the back of them, I had constant pain as well. Also for about a week I had stabbing sensation in my left eye. I've had similar issues over the last couple if weeks but not as extreme. This week it has just left me extremely tired with achy eyes and body. The MS nurse suggested this was eye strain and to have constant breaks and reduce my reading time. I have barely read any books since & saved my reading time for my job in IT. Man I hate listing my problems! Thanks for listening.
Ezza
Newbie
 
Posts: 5
Joined: Sun Aug 05, 2012 1:48 pm

Re: New from New Zealand - frustrated and tearful

Postby want2bike » Mon Aug 13, 2012 3:55 am

The paleo diet is an excellent choice. It can take time to heal as with Roger MacDougall.

http://www.franksherwood.com/tnms.htm
want2bike
Family Elder
 
Posts: 742
Joined: Thu Sep 15, 2011 8:15 am

Re: New from New Zealand - frustrated and tearful

Postby jimmylegs » Mon Aug 13, 2012 4:41 am

hey there, ok just thought i'd ask if you have access to nutrition testing, and a serum zinc test in particular?

i put some info together on my regimen thread (after your initial post, but before you answered me re details).

here it is: regimens-f22/topic2489-420.html#p196239
jimmylegs
Volunteer Moderator
 
Posts: 9153
Joined: Sat Mar 11, 2006 3:00 pm

Re: New from New Zealand - frustrated and tearful

Postby Ezza » Wed Aug 15, 2012 10:44 pm

You guys have been so awesome and got me through a bit of a dark few weeks. I have some good news...after going back to the optometrist it seems by eyes have good better since June. This is why I was having so many issues with my new glasses! Whether it be repaired from the episode or the diet and supplements kicking in - I don't know but hooray.

I needed the reality check want2bike - I think I still expect to be better instantly! Well duh this is MS uh ;)

Jimmylegs - I'm not sure to what level the doctor has tested me but I have had loads in the last year. I am taking Vit D3, omega 3 & magnesium plus have Zinc drops (which I haven't been taking). I believe that nutrition is a big part of the management and will certainly have a good look intuit now.
Ezza
Newbie
 
Posts: 5
Joined: Sun Aug 05, 2012 1:48 pm

Re: New from New Zealand - frustrated and tearful

Postby jimmylegs » Thu Aug 16, 2012 4:05 am

hey there, can you provide a link or brand/product name so that i can check out your zinc drops? and... take them! :) if you can get a copy of your test results for your own files, it would potentially be useful to see those. standard appraisals of 'normal' aren't quite where they need to be for good health.

glad to hear you're doing better!
jimmylegs
Volunteer Moderator
 
Posts: 9153
Joined: Sat Mar 11, 2006 3:00 pm

Re: New from New Zealand - frustrated and tearful

Postby want2bike » Thu Aug 16, 2012 4:25 am

Glad to hear you are doing better. Stick with the paleo diet.
want2bike
Family Elder
 
Posts: 742
Joined: Thu Sep 15, 2011 8:15 am


Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service