First Youtube Video

[kindandcaring]

Hi Everyone

I finally got around to doing a Vid

its not pretty (nor am I) ..hope you can understand Australian and in a dull monotone at that !..hope to improve on the sound in the future vids..so apologies in advance..
Though it  is easy to do a video..especially if you have a  webcam

http://www.youtube.com/watch?v=o9lm2UFoI74

I encourage others to do the same.

All the best
Ron

[kindandcaring]

nobody has commented either here or on Youtube ..thats good or bad..I don't know. 

Apologies if its bad with big B

[Tricia281]

Hi Ron,

I watched your video this morning and and although we don't share all the symptoms or the same autoimmune diseases, we do share many of them and the frustration, the on-going pain and dire fatigue and the high-emotional and for me finaical cost.  Like you i have had symptoms for years, my doc now estimates I have had Sjogren's for 8-10 years and in fact i can rememeber even before that carrying a water bottle around, before it was fashionable!  My mum used to tell me it was a 'bad habit' i had as I then always needed to pee!!!!!!!!!!!   The trauma that triggered it all though was a massive nose bleed of all things which ended me in hospital and from then on it was a rapid downward sprial. 

I hope the new treatment works out and your dream for getting the word out on how serious autoimmune diseases are and the enormous effects on quality of life of those suffering.

Cheers,

Tricia

[Sandra]

You know I am starting to think about my experiance, which is much like yours, only i think I have had many more positive  diagnosis, is that like a good rhematologist told me once...."it doesn't matter what you call it, they are all the same, but must be treated" and I believe that. I could care less at this point what they call it, shoot add what ever you like, as long as you help me live as best I can with it. I have thyroid, Addison's disease, autoimmune early menopause(by age 40), sjogren's, prmary biliary cirrhosis, and fibromyalgia and see a neurologist in Nov for results of central nervous system involvment. Bottom line I'm still me under it all and nothing will ever completely change that. I do beleive if we spend too much time trying to sort, that the treatment of the whole self is forfited. I have all the symptoms you discuss and a few more. I take prednisone and steroid replacement for the Addison's disease, thyroid hormone, tummy medication to help handle the meds and amitriptyline 10 mg for pain and sleep. As far as the whole picture,or autoimmune problem I have so far not been able to handle anything. Plaquenil has been my dr's montra since 2005. I have tried so hard to comply as I trully believe her and him, but my stomach and body just fights it every step of the way. I was hoping that maybe there was something else, but anything in the chemo drugs doesn't sound good for me. My body is a balancing act when my GI tract is not happy nothing is, so I do my very best to keep it in check, it's hard. For now I choose good living, learning coping techniques without guilt and pray that nothing vital goes to wrong. This is my rheumy's fear, and why she really wants me on the plaquenil.
Do you take plaquenil? Many on this board do and do well on it. Are you able to enjoy life? Do you spend allot of time thinking about what you could used to do or how you need to find out what's wrong and how to fix it? Those two things are  quite normal rationals but ended up becoming toxic. Doctors are only too happy to pass the buck/patient when dealing with AI disease. The patient suffers for it. What's your life plan? Mine is to forget too many plans and graciously accept all and any wonderful times that I will get to enjoy and to not be hard on myself when things get rough. Thanks so much for your video it is permission for me to take care of myslef, and I hope you do too. Sandra

[kindandcaring]

Hi Ron,

I watched your video this morning and and although we don't share all the symptoms or the same autoimmune diseases, we do share many of them and the frustration, the on-going pain and dire fatigue and the high-emotional and for me finaical cost.  Like you i have had symptoms for years, my doc now estimates I have had Sjogren's for 8-10 years and in fact i can rememeber even before that carrying a water bottle around, before it was fashionable!  My mum used to tell me it was a 'bad habit' i had as I then always needed to pee!!!!!!!!!!!   The trauma that triggered it all though was a massive nose bleed of all things which ended me in hospital and from then on it was a rapid downward sprial. 

I hope the new treatment works out and your dream for getting the word out on how serious autoimmune diseases are and the enormous effects on quality of life of those suffering.

Cheers,

Tricia

Thanks for watching commenting and also sharing your experiences Tricia.

Youtube is a great way of sharing our experiences..yet we have all unique set of circumstances and experiences to share..if you ever feel the need Id encourage you to do a Vid ! Id love to see your story.

We can all learn from each other...and Doctor's can learn from us as well...Im sure they view Youtube just as we know they brush by this board on occasion...some could learn quite  a lot from us...learning from others mistakes makes the future diagnosis for others easier...and perhaps treatment responses and experiences if shared can also help us all.

Lets face it for Autoimmune related diseases the medical world needs all the help we can give it...as well as getting the message out to the people how bad the situation is...just might help things move along.

Thanks for you good wishes back at yer !
Ron

[kindandcaring]

Sandra,

First up thankyou for sharing your life experiences with all these darned diseases !
(also thankyou for watching my Vid story)

We are all slightly different in what our symptoms are and the exact disease its name has..but as you say underneath we are all suffering from a mucked up immune system...for whatever reason that is.

I wonder if I have PBC...always have..yet Doc's refuse to do a biopsy..just label all my symptoms HLA-B27+ related and leave it conveniently at that...and then you get the "let's watch and wait" ....Thats why I pay them so much money for them to tell me those four golden words..Lol

Plaq..no they refuse to prescribe as they do not believe its Sjogren's...

Ive tried hard to find something that works for me..yet Ive nothing from any Doctors or from what Ive found myself to date that has worked...rapid progression in Symptoms continues ..and I fear if I think about it that the future is not good..Im sure like a lot of us I do not like to think too far ahead...!
Yes I love life ..though I get pain from it all the time now..once was in the background now its at the front..cant ignore it like I once was able..same with the fatigue as it stops you doing the things you enjoy

When looking for answers it helps to keep my mind occupied..I don't feel its a negative thing to do..I can understand why some feel it is..but i wouldn't have the same understanding of whats happening to me, others and the whole Autoimmune Disease Status in the world if I hadn't sought answers...(and I might add most answers have not come from Doctor's)...they always play the you don't need to hear what I'm thinking attitude..Im a bit different from some I guess..rather I feel if we are ever gonna learn about AI's ..(Doctors included) we all need to tell it like it is..

If it were not for my family I think Id probably be struggling even more ...so I love them all so much
Lets do our best in life now with what we have working at every moment we are given.

Your story is huge Sandra.. if you ever feel the need to express I encourage you to share your experiences on Youtube as well..we are all fighting in the best ways we know and we can learn so much from each other.

I echo your thoughts on living life to the best of ones ability even with all the unknowns we have and pain we have...and am currently looking to forward to a huge holiday

Cheers Sandra and all my Bestest thoughts
Ron

You know I am starting to think about my experiance, which is much like yours, only i think I have had many more positive  diagnosis, is that like a good rhematologist told me once...."it doesn't matter what you call it, they are all the same, but must be treated" and I believe that. I could care less at this point what they call it, shoot add what ever you like, as long as you help me live as best I can with it. I have thyroid, Addison's disease, autoimmune early menopause(by age 40), sjogren's, prmary biliary cirrhosis, and fibromyalgia and see a neurologist in Nov for results of central nervous system involvment. Bottom line I'm still me under it all and nothing will ever completely change that. I do beleive if we spend too much time trying to sort, that the treatment of the whole self is forfited. I have all the symptoms you discuss and a few more. I take prednisone and steroid replacement for the Addison's disease, thyroid hormone, tummy medication to help handle the meds and amitriptyline 10 mg for pain and sleep. As far as the whole picture,or autoimmune problem I have so far not been able to handle anything. Plaquenil has been my dr's montra since 2005. I have tried so hard to comply as I trully believe her and him, but my stomach and body just fights it every step of the way. I was hoping that maybe there was something else, but anything in the chemo drugs doesn't sound good for me. My body is a balancing act when my GI tract is not happy nothing is, so I do my very best to keep it in check, it's hard. For now I choose good living, learning coping techniques without guilt and pray that nothing vital goes to wrong. This is my rheumy's fear, and why she really wants me on the plaquenil.
Do you take plaquenil? Many on this board do and do well on it. Are you able to enjoy life? Do you spend allot of time thinking about what you could used to do or how you need to find out what's wrong and how to fix it? Those two things are  quite normal rationals but ended up becoming toxic. Doctors are only too happy to pass the buck/patient when dealing with AI disease. The patient suffers for it. What's your life plan? Mine is to forget too many plans and graciously accept all and any wonderful times that I will get to enjoy and to not be hard on myself when things get rough. Thanks so much for your video it is permission for me to take care of myslef, and I hope you do too. Sandra

[lynnmarie219]

Hi Ron,


I just watched your video! Thanks for helping to get the word out by telling your story!

[Billydude]

Thanks for sharing Ron.   I've made a few videos too about Sjogrens....

http://www.youtube.com/watch?v=8AG3tcYUfvs

I think it really helps to share our experiences for those who are trying to figure out their own symptons.
Steve

[kindandcaring]

Hi Lynn

No problem..

thanks for watching the Vid...anything we all can do ..like this great forum..making our own videos..to get the message out to all those who need help and to all those who are healthy but do not know how big and bad the situation is for all Autoimmune sufferers...I know we all make a difference..and if we keep going letting people know then changes for the better will occur.

All my bestest

Ron

Hi Ron,


I just watched your video! Thanks for helping to get the word out by telling your story!

[kindandcaring]

Thanks for sharing Ron.   I've made a few videos too about Sjogrens....

http://www.youtube.com/watch?v=8AG3tcYUfvs

I think it really helps to share our experiences for those who are trying to figure out their own symptons.
Steve

Hey Steve
Thanks for watching ...making that first one is probably the hardest would you say ?

You were the final inspiration for me to do one..so thanks heaps for that.

It really IS helpful to see and hear from someone who has that same thing as you to relate or to help in diagnosis..it is so beneficial..

And Doctor's (I know we all see so many..with differing amounts of success) some of them Ive seen will learn a lot from this forum and those video's ...after all we are real patients talking about real symptoms..instead of symptoms out of a text book LOL

Cheers
Steve

I

[pudmott]

Hello fello Aussie,

Its pud in NSW. Where are you? I just watched you video. Its awesome. I love it. I have jut been diagnosed with sjogrens though i have been being investigated since last year.Like you i am sero negative but have all the hallmarks of dry eyes, mouth, nose, GI tract muscle fatigue and aches, joint pain possibly some neurological stuff. I am under an immunologist. They seem to go more wth immunologists here rather than rheumies like in the states and such. I didn't have the lip biopsy. I had the schirmer's test where they put the paper under your eye lids. I have the tear production of an 80 year old. That would be ok if i was near 80 but im only 35. Also i had a radionucleotide scan of the salivary glands also called a scintigraphy scan. This showed that i had a lot of damage to my parotids and also my submandibular glands with markedly decreased salivary production and only a small residual flow. My doc diagnosed me on those tests and the other symptoms i was displaying. I can't believe your doc says you havent got sjogren's also too plaquenil is not just for sjogren's. it is used in many of the autoimmune diseases primarily for its ability to ease pain (inflammation) and fatigue which you quite clearly have. I think it might be time to look for a more forward thinking doctor. There is so much that can be done for you that is clearly not happening. You have the right to demand proper treatment and if you aren't happy then you need to go elsewhere. LIke meyou are only young and we have a whole lifetime to live with this. We need to get it right now. I have just changed my Gastroenterologist because i was not happy with the treatment i got from the first one. I did the same with mydentist who was very intimidated by the fact that i knew what i was dealing with and couldnt be baffled by his bullsh**. I suppose too it helps that im a nurse and have access to a lot of imformation that others dont and i try to pass it on here when i can. If you need any assistance with stuff feel free to pm me and we can get the aussie connection going. I may be able to hep you with a few tests or contacts you can use depending on where you live.

Thanks again for posting your video. it was really good. I hope you can start to get some answers.

Pud

[Sjenny]

Dear Kindandcaring:

Great video - very informative, also just LOVE the Aussie accent!

You are suffering terrible fatigue - I did too, the "how can I be this tired and not die" type of fatigue until I took LDN (low dose naltextrone).  I finally found a doctor who was willing to prescribe it for me upon recommendation from a wonderful person who has MS.  It did not help the dry mouth as I had hoped, but my fatigue evaporated and has not returned even though I discontinued the LDN.  See www.lowdosenaltextrone.org

I discontinued the LDN so I could try a course of the the low dose alpha-interferon tablets for dry mouth.

Very excited that you will be trying a new course of treatment - can't wait to hear about it.

Best Regards,
Sue

[kindandcaring]

Hi Pud 

Thankyou for watching me Vid..Im glad it felt relative to your situation as well.

Yep we are too young to have this kinda stuff ! However there are many on here who get it younger ..so ..I guess I have to say we are lucky that it wasnt sooner...cold comfort for us I know ..only never is soon enough in my book.

One trouble Ive got is...where I live..no other Doc option.
However if you know a good one in NSW...please let me know and I will try and get to see him/her

It's interesting that you are seronegative..! Im assuming you are not HLA-B27+ ?

I think this is where my Doc maybe is stuck in the mud so to speak.

Yes I have Arthritis which is related to HLA_B27+ but is that Severe Dryness related ?. or is Hashimoto' s ? and GPC antibodies ?...high GGT ?
If I were a betting man..I'd say Ive got HLA-B27+ related Arthritis issues as well as non HLA-B27+ related Multiple Autoimmune Diseases...A lucky guy perhaps NOT..but sometimes thats the way the cookie crumbles.

It seems because Im a guy it makes things even more difficult for Doc to accept that its a Sjogren's type illness...

Now if you talk to my Ophthal he will tell you I have Sjogren's...
The last thing my Doc said to me last week was that he is thinking of putting me on Prednisone.

Pud  thanks again for your reply and yes the more I think about it I would try that Doc of yours

Cheers
All me best
Ron

[kindandcaring]

Dear Kindandcaring:

Great video - very informative, also just LOVE the Aussie accent!

You are suffering terrible fatigue - I did too, the "how can I be this tired and not die" type of fatigue until I took LDN (low dose naltextrone).  I finally found a doctor who was willing to prescribe it for me upon recommendation from a wonderful person who has MS.  It did not help the dry mouth as I had hoped, but my fatigue evaporated and has not returned even though I discontinued the LDN.  See www.lowdosenaltextrone.org

I discontinued the LDN so I could try a course of the the low dose alpha-interferon tablets for dry mouth.

Very excited that you will be trying a new course of treatment - can't wait to hear about it.

Best Regards,
Sue

G'Day Sue

Thanks for watching the Vid !

Ive actually tried LDN for 9 months without any success.
I know it appears to work for some and am glad it worked for you.
It does appear that what works for one does not mean it will work for all.
Its a shame but thats the way it is..I gave it ago..and at least it was another option..and we dont have enough of those..so I would say to anyone give LDN ago.

The treatment is starting in a month and will take a few months to know if it's working.
In a few months I will talk about it again..so dont forget..till then I wont say anything further..but rest assured good or bad results I will tell it like it is.. : )


Thanks for your reply

All me bestest wishes
Ron

[Joojie]

I watched the video - I glad you posted the link here - I have your's and Steve's both saved.

Steve's videos were what brought me here !!!  I just couldn't believe, when I watched and listened ..... that was me !!!  I had been a lurker on the forum for quite some time, but once I saw that video - the questions started coming ..... and I started posting.

I feel for you - you are dealing with a lot.  The fatigue ?  Oh my - it is unexplainable.  NO ONE can understand unless they have experienced it I don't think - there is nothing to compare it to.

I will keep you in my thoughts my friend....................

Peace.............Nancy

PS: You mention being HLA-B27 positive - have you visitied The Sponylitis Association of America ??  Lots and lots of info there - and I think some of your questions may be answered.  All of the Spondy's are covered - inclucing Reiter's/ReA: http://www.spondylitis.org/about/main.aspx   There are others there from the UK, and I do believe Austrailia.  Good luck !!!