Finally a diagnosis

[bearsmum]

Sorry I haven't been on here for a long time.  Just letting my friends who have stuck by me during my diagnosis journey that they have diagnosed me with a Mitochondrial Disease with the MELAS version.  Something that did surprise me though was when I notified a friend in my local area about it who has MS and is president of her local community group says that I still qualify for any emotionally and financial support from the MS Society as this disease stems from the same basic neurological disorder as MS.  I am getting support from everywhere which I am extremely grateful for.
Emotionally, I don't know yet what to think.  Even though they suspected that this was what I had all along and I have had plenty of time to get used to the idea, having a definate dx has put me in a spin.  Sometimes I am ok about it, other times I am teary and other times angry.  I am on a roller coaster at the moment.  I think it is because there is no known treatment that has successfully worked and that it is fatal and very progressive I can only think that it is all downhill from here on in but I am trying to keep a very positive attitude and keep on fighting emotionally.
Don;t know if I am making much sense here but my mind is in a bit of a scramble at the moment.
Thank you to you all who have stood by me and have given me so much emotional support, I really appreciate it.
I hope you are all faring much better than I am and would appreciate it if I am still welcomed to stay with this group to have someone to talk to when needed.
Love to you all
bearsmum - Nancy
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[RockinRuth]

I am new to this site and saw your postings and I am sorry to hear of your DX'd. I am going to read about your DX'd as I have never heard of it.  I recently have been DX'd with parathesia and Sjogren's.  I go to a Rhuematolgist on Oct 1 for more test.  They feel I might have another auto ammune system disoder.  I guess knowing will make me happier but like you put it, the rollercoaster is more how I feel.  I am glad to meet you and will stay in touch with you.  Ruthie

[Heather3418]

As I told you in the PM, I am here whenever you need a soft shoulder to lean on.

Always in my prayers,
Heather

[bearsmum]

Have any of you guys realised just how loved you all have made me feel.  I am getting more love and support from you guys from all over the world that I am getting from some of my so-called friends right here where I live.
Times like this really shows who your true friends are, and all you guys, are simply the best of them.
I have cried, ranted, raved, thought, and everything else in the last week, I am exhausted. But, I will pick myself up, dust myself off and keep moving on.
Thank you all for being there for me when I needed someone to talk to in a real time of need.
Love to you all
bearsmum

[sllowe]

Hi B-Mum,

I know my typed words here will not express my tru thoughts or feelings. You are family to us, and you are loved here and I'm in shock over the dx (p'o 'd but sad at the same time) and wish it were not so.

I will learn more about this disease because of you, Nancy. No matter what you are feeling or when know you've got me and the lot of us at any given moment  - to shed a tear, or put up your best fight, or to rest.

I'm sending you the strongest and warmest of hugs and all the strength I can muster and I pray you can feel them. We've got you surrounded.
love,
-shell

[Nancy_LA_MA]

Regarding that website:  Thank Mr. Google.  :-)

[bearsmum]

Nancy_LA_MA
I have just read the site you quoted - I have never seen this one before and thank you for letting me know about it, yes, it is much easier to read and understand.  And to think that I thought I have just about read every single site - LOL,
bearsmum

[Nancy_LA_MA]

I found this other site easier to read and understand:
http://emedicine.medscape.com/article/1162238-overview

Biowham had some good questions.  
More positive thoughts here toward slow progression...

[Udkas]

Hi Nancy,
I have been thinking about you and wondered how you go on, although you knew what was likely it must be a damn shock to hear it confirmed!

I am a little stuck for words but I pray that you do have quality of life, I always think there must be hope, i hope your dogs are giving you lots of cuddles, i am glad that you
have some support group, that is the wonderful thing about the internet, we don't feel so alone with our problems.

Sending lots of cyber hugs your way.
UDkas

You can't leave this forum!!!  You have to stay around.

[bearsmum]

the above website is a very good one which explains a lot of this in fairly simple terms and is not overloaded with technical medical jargon which none of us can understand.
bearsmum

[PastorDan]

FYI: http://en.wikipedia.org/wiki/Mitochondrial_encephalomyopathy,_lactic_acidosis,_and_stroke-like_episodes

[bearsmum]

thank you everyone for your loving and kind thoughts and wishes.
Generally with adult onset MELAS once you get to a  certain level of symptoms which is where I am now at, it is usually a fairly rapid decline.  It is also a known fact that most people don't get to the natural cause death, most of them O.D. and the Mitochondrial Foundation is strongly pushing for enthusanasia (not sure on spelling there) as the pain level just gets too much for them to handle, and I am for one, a strong believer in quality of life, not quantity of life.
At this stage they have not come up with any sure treatment that successfully works.  They have put me on medication which helps with the migraines and epilepsy, also medication for the nausea and vomiting,  morphine patches for the pain, and as of next week I will be starting deep muscle massage therapy to get the lactic acid to go back into the bloodstream which causes a lot of pain and cramps.  Most days my legs and feet feel like they are on fire and as soon as I stress my muscles in any way I get massive cramps.  I continually am rubbing stuff into the muscles in my hands and wearing mittens to keep them warm to stop the cramps.
I am with a support forum online which has world-wide Mito patients and through facebook I have found a couple of them who actually live in the same state as me and we have so much in common it is unbelievable.  I hope to meet her one day.  She is with the Australian Mitochondrial Foundation and they are putting together a Mito Action Week where we all get together and have lots of events, massages, pampering, fun and games.  I am looking forward to it and getting to meet other people face to face like me.
Once again, thank you all so much for reading my story and I have put all your love and wishes in my heart which has already made me feel a lot better and cheerier.
bearsmum

[Lulu54]

Nancy,
There has been more discussion lately about mitochondrial and the mitochondrial disease - I heard a doctor talking about it on tv last week and it has been a part of several discussions over on the women heart board I began at.

I am so sorry to hear you are now living part of this story.  I am unfamiliar what the MELAS version is and will go try to learn more.

You are most welcome to come here anytime you need to vent or have a sympathetic ear..... please don't wander far from us.  Don't make us come looking for you!

Wish the news was better for you and your family - take the time to process it and find things that make you happy to help with the positive mood.

as always,
Laura/Lulu

[HVAC]

Nancy,
  Hang in there. I will be thinking of you.
Alex

[MsWobbles]

Dear Nancy,

We all want to be diagnosed, and usually our diagnoses bring some measure of comfort, but in your case I am so very sorry to hear about your diagnosis and that it is fatal.  

I never heard of that diagnosis before - totally unaware of mitochondrial disease with MELAS version.  So that's something I have not looked into.  Noted that you're in Australia - maybe that condition goes by a different name here.  No MD has ever mentioned it to me nor have I read a thing about it here!

Hoping they're wrong about it and, if not, hoping and praying for a miracle for you!

WAF

[Guitar_grrrl]

Wow!, I'm so sorry to learn that.  I'll be thinking good thoughts for you.

Playing a tune for you,
Guitar_grrrl

[saveone]

You know you have my support.  I sent you an email a little while ago.  I am going to google and read up on it.  I did this before but I didn't retain the info.

Wishing peace and strength for you to walk the path you are on.

((((((((((hugs)))))))))terry

[PastorDan]

From what I've learned in my 8 months or so on this forum, no one is ALLOWED to leave, so don't fret that, ever.

Meanwhile, you will be in my prayers, and I will be somewhere around here if you ever just want to talk about it.

[Wobbly]

Hi there, sorry to hear you got this Dx.. it's not an easy one to accept even if it's the one they thought it would be.  I hope you find strength and courage to guide you.  And that the progression will be a slow one.

You are part of this family here on our forum, you know that... and we will want to stay in touch with you.  I'm glad the MS support group will help you out there and do what Bio said too, look online for other support groups have might have people who know more about this Disease as well...(you can have only one more then us)...hehehe

take care dear...and remember we are here for you and your family
wobbly
dx PPMS

[rendean]

Sorry to hear of your diagnosis. Will be thinking the positive thoughts as Bio described.

Bigs Hugs,

Ren

[biowham]

Is your onset in adulthood? Is that a promising sign? Mitochondrial disorders, based on my understanding (and I hope it's right because we also teach it), can be quite variable depending on the numbers of original mitochondria you inherited with the mutation. What do your experts tell you? Do you carry whichever mutation this is in all mitochondria, or do they find any normal sequences? Also, there are some experimental therapies that have shown promise.

I'm sorry about this dx for you, and your roller coaster feelings are certainly so very expected. Are there any support groups, online or in your area? Of course, the folks here will continue to provide the great support they always give, but MELAS has some other specific MELAS-related things that those with it and experiencing it and getting treatment for it might be able to share with you.

You are in my thoughts. That sounds dire and serious, so I will try to keep positive thoughts for slow progression, efficacy of some of these trial therapies, and near future for further therapies.

Bio