My secret

[Guest Finrussak]

Hi Ernie

I am so sorry to hear of the frightening situation you are in! I am also relieved to find out that I am not alone trying to live with uncertainty. Due to cardiac damage and nervous system damage the tick crap has wrought, plus the predisposition to the mixed dysautonomias I have, my episodes can be fatal to me as well. Of course, it is most dangerous when the episodes corresponds with a flare in Lyme etc thereby causing my heart to STOP. We have caught this on monitors as previously they all thought I was nuts!!! It is VERY scary to feel one's heart stop and know that if it doesnt restart within 4-5 seconds you will faint and IF at same time the BP is low or some other overlapping event, it will NOT restart again. Luckily I have had the near miss just 5 times in past 18 months and obviously I am still here. Also I too run a very high stroke risk due to high pressures in brain vessles especially after an adrenaline surge that my body does when my heart stops, and cant take drugs due to the opposite conflicting issues. I too cannot use a pacemaker/defibrillator even if they ablate, again due to the issues. It is very scary indeed when all your cardiologist can do is stand by and turn pale and only provide last minute "saves".

Its even worse watching my kids' faces as they dial 911 wondering if this is "it"!!!

I dont say this lightly as its often not the case but: I live your nightmare!!! Some days I try to forget and go on, other days it consumes me. I have psychology support as Im sure you do, but as you know every day is a struggle. I pray each day for the strength to just bear it and miracle of relief and I wish the same for you!!!

I was once told by a nurse who has become a close friend as well, that there are MANY of us out there facing imminent danger from a variety of illnesses and due to not wanting to scare others or not wanting to share fear or many other reasons we just dont know about it. THANK you for being brave enough for me and others to feel that we are not alone ...and so that I may tell you that YOU are not alone!!!

Be well Ernie and be strong.

Finette

[ben_uk]

Ernie,

I admire you so much.. You are a very selfless, giving person and I hope and pray that a new drug will be able to help you.

I know that research is being done all the time in Israel and Please God thay will find the right one for you and everyone else as well.

Best wishes

Ben (London)

[DancingLight]

Ernie,

I want to honor how much I love and care about you by responding with brevity!

You are a foundation of this community and I care very deeply for you. I continue to admire your kindness, compassion, honesty, generosity, humor, etc. in the face of your own adversity.

Your burden is too much to carry alone.

I am grateful and honored that you shared with us and reached out for the support.

You are always in my thoughts.

Much love, Emily

P.S. As for worrying...I'm already a worrier!

[Miriam Poorman-Knox]

I too have Hbp in my brain and they gave my eye drops to use 3x a day, also plavix. More importantly is that I now sleep with oxygen. I notice a difference. See the Dr. tomorrow and will ee if there is any change. Miriam

[Evie]

Hi Ernie,

Wow thats a large secret and must be a huge worry for you. I dont really know what to say other than im really sorry that this is the case for you and you are very brave to face it. I think alot of us have "time bombs" ticking in our bodies but we are not aware of them thank goodness (obviously its nice to be able to prevent things, i just am talking about the emotional stress that would come with knowing that they are ticking).

Do they really have to do those tests? If the drs really think there is that much of a risk then is there another way to proceed?

Thank you for sharing with us. It must be so tough to have to face this. Thinking of you and sending big hugs postive thoughts your way...

xoxo

[Ernie]

Hi,

You are all giving me such good advice and support. You help me feel better, stronger and more confident. I was able to sleep without nightmares.

I will find a way to diplomaticaly ask the specialist what he will do if my heart stops during the test.

I have decided that I will survive this week's testing (it helps to be positive!) and I went and bought myself a camera to celebrate and give me an incentive to come back home!

It's not an absolute necessity to do the testing but if I want a diagnosis and some better medication for my condition I need to do it. I am willing to take the risk of testing because I want a better quality of life. I feel it is a calculated risk. The testing is getting more specific than it was a year ago because doctors are getting closer to find what's wrong. 2 specialists have told me that they are very close to finding the cause of my paralysis. I also feel they are very close.

Wow Emily you really impressed me! Your writing style is similar to mine!

I am relieved that you all understand so well was I go through. Not that I wish anyone to be sick but I appreciate to be able to relate to you.

I take sleeping pills when going to bed and I need another pill at around 5:00 because of the adrenaline rush. That's the only way I can sleep since I crashed 5 years ago.

Thanks for being concered about my well being. I appreciate that you pray for me or that you think about me on Wednesday and Friday.

I will post as soon as I can after the tests.

Love

Ernie

[DancingLight]

Ernie!

I am so glad I could give you a little teeny tiny smile!

I will anxiously await your post when you are able after the tests...and until then, I will worry lots and probably be awake at night too!

You will be in my thoughts A LOT!

I love so much that you bought a camera. That you have done what Katherine said...chosen hope over fear. It is so hard to do.

I, too, got a camera for my birthday and I did it b/c it brought me hope.

Hugs, Emily

[lthomas521]

Hi Ernie:

I can't believe that the doctors think your case is too "complicated" to diagnose. Yes, you have complications, but the condition itself shouldn't be that hard to figure out. You have mentioned in earlier posts that it is an autosomal dominant inherited trait in your family. That suggests an inborn error of metabolism. I think that the problem in your case is that the doctors are regarding each of you as an isolated individual, not as a member of a kindred, half of whom all have the same bizarre problem. When you have a disease that is so clearly hereditary, a diagnosis for one can be a diagnosis for all of the affected people in the whole family. I used to work for a veterinary journal, and I can tell you that veterinarians think that way. However, human doctors rarely get to treat a whole population of related individuals. So maybe they just don't get much practice in figuring out rare genetic problems.

My best guess is that you have the French Canadian form of autosomal dominant hyperinsulinemic hypoglycemia (http://jcem.endojournals.org/cgi/content/abstract/82/4/1192). I really really really hope that this is what's wrong with you, because it responds well to treatment with diazoxide. However, your doctors are unlikely to figure it out on their own at this point, because you probably have some degree of insulin resistance by now, which clouds the picture. The question to ask, I think, is whether you (or any of your affected relatives) have a missense mutation (Arg1174Gln) in the tyrosine kinase domain of the insulin receptor gene. It would probably be cheaper, and almost as reliable, to simply find out if you are a blood relative of the other people in the JCEM study.

Can you postpone the potentially heart-stopping test until after they figure out whether you have the insulin receptor gene mutation? If you have the mutation, there would probably be no point in doing the dangerous test.

Best of luck!

[Sunfish]

dearest ernie -

despite my being quiet on the board i have been thinking about you a lot the past few days since reading your post.

while i'm sorry that you have had to be keeping it, i'm glad that you felt able to share with us. i really do count so many on the board as my cyberfamily and care about you so much.

i don't think that any of us can totally know what one another are feeling are going through (although it's a lot more possible here than a lot of other places!) but i do think i can understand your thoughts about testing being the best choice in hopes for a better life. and while i don't have the exact same situation as you i have had other situations wherein i've really stepped back in disbelief and could easily fall into fear if i allowed myself to (which isn't to say i don't have my moments..i do!). phrases such as "rapidly progressing systemically" and having folks at the specialty centers tell me that i don't fit any of the categories and that they don't know what to do with me is less than comforting. for whatever reason i don't fear death....just getting more and more sick.

but that said, i don't presume to be able to understand where you're at. we're all so different. but i do care. and i can only imagine the added fear of having your brother pass away after having similar issues. you're a very strong woman.

so many other have already said so much of what i would want to say and i won't repeat it, but do know that you've been in my thoughts & prayers. and you will be as you go forward with the testing this week. i'm glad that you're going to speak with the doctor(s) more extensively beforehand. and i REALLY hope you are able to gain more info and answers that will help you in moving forward.

keep on keepin on,

melissa

p.s. yippee for your camera purchase. i'll be waiting for some pictures on the faces site!

[DancingLight]

ernie,

i just wanted to let you know i'm thinking about you each and every day extra this week as you prepare for your tests and then go for them.

i do hope that you did not take my attempt at humor to be in any way flippant. i do not want to minimize yoru suffering at all.

you are someone who i care very deeply for and have grown so fond of over the years. sometimes, i use humor b/c i don't know what else to do...it's so absolutely painful to be so sick.

sometimes i think i fear the progression more than death itself...like melissa said...b/c i have gotten so much worse and it is scary. i admire how much you choose hope over fear and i strive every day to do the same.

my fave quote: hope is the thing with featehrs that perches in the soul and sings the tune without words and never stops at all...

much love and thoughts as you head to testing,

emily

[Ernie]

Sweet Emily,

I am not offended by anything you said. I re-read your post and I don't see anything wrong with it. Hope you will sleep well tonight!

Thanks for thinking about me.

[calypso]

Ernie,

I have been thinking about you all day and forgot to say yesterday that just because you are a complicated case doesn't mean your doctors can say -- with any certainty -- that one of your episodes could be deadly. If the doctors don't understand how YOUR body works with this condition, then how can they predict what's going to happen to you? I really am bothered by doctors and health care workers trying to apply the common themes of an illness to every single person who has that illness. We are all individuals who behave very differently. Some of us eat well, and some don't. Some exercise, and some don't. Some would rather be on medications, and some don't respond well to them. Etc., etc. I just want you to keep thinking positively -- which it sounds like you already are doing -- and try not to get too caught up with predictions that are admittedly guesswork at best.

Take care.

Amy

[Mrs. Glass]

Ernie dont feel bad because you kept a secret. It is harder when you voice it than when you keep it sometimes. We dont want to admit that we are terribly sick, and that is ok. It is hard to accept. You are only human, you have fears just like the rest of us, hang in there. My prayers are with you. Vanessa

For the past 2,5 years I have been keeping this secret but now I just can take it anymore. I know how some of you worry a lot and I did not want to scare anyone. Tonight I speak because I feel so lonesome.

Since June 2003 I have been told by 3 different world researchers in 3 different research facilities that I am a very complicated case. The 3 of them have told me that I have the highest adrenaline level and they don?t understand why I am still alive because people and lab animals die before reaching the level of adrenaline that I have. They can?t tell me what to expect of my POTS because I am the benchmark.

They told me my heart and breathing could stop anytime during an episode!!!!!!! And then I would fall into coma and die.

Last week, after looking at my blood work taken during an episode, my specialist told me that I have to be careful because I could die during one of them!

I try not to think about it but next week I have 2 days of testing and they are going to trigger 2 episodes. I just worry so much because I want to get the tests because it will help find better meds but I don?t want to die.

Before my brother died, I was telling myself that doctors were exaggerating. But now I know different and I worry.

I am sorry if I can?t uplift your spirits when you guys and girls are down but I feel so crushed by this sense of doom that I don?t have the emotional energy to give you what I had when I was ?healthy?. I think of all of you every day and I hope I will still be there for you many years to come.

I am going back to bed now hoping to sleep it off.

Thanks for reading me.

Love

Ernie

[pamela]

Ernie, thank you so much for opening up to us here. We are all in a precarious position of not knowing what are future might bring. However, you are on this site for a reason: to share, to comfofrt, to scream, to cry, find answers, find friends, and be a blessing to others. Please staty strong and I will keep you in my thoughts. Email me anytime you need to talk.