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Posted: September 19th 2009

Crystalkd

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Hi all! My name is Crystal. My story most likely isn't much different from others here. My neurologist thinks I have a mito disorder. I've been fighting this for so long I'm not even sure when it all started. I have Cerebral Palsy on top of that. I'm being treated with meds to keep my blood pressure under control but it doesn't always work. Also I'm now on Carnator which seems to be helping. I've had to start using a power chair when I leave the house and am having to move in with friends since I have problems taking care of myself now. I have not had a biopsy yet because I can't afford it. There is also the possibility that I have Multi System Atrophy. I'm going to Vanderbilt Movement Disorder Clinic in February but some days that seems so far a way. I've been fighting major symptoms for about three years now and I have days when I get so frustrated. In the last 5 months my life has pretty much come to a grinding halt since everything has gotten worse. My brain is already involved in what ever this is. I'm frustrated and don't even know where to turn any more. I keep hitting brick walls and I'm tired of it. I just want to know what's wrong and know once and for all what I'm dealing with instead of this "nameless monster" as I call it.
Tina_EvesMum's picture

Crystal wlecome to the

Submitted by Tina_EvesMum on Sat, 09/19/2009 - 3:14pm.

Crystal wlecome to the family here! You will get much support and love from here. I can so identify with your frustrations, the medical knowledge and insight into this monster is so sparse, and so difficutl to follow and understand, and when you get someone who does trying to get everyone else to go to them for advice is like getting blood from a stone. However here you will find others who have good strategies to help you and to enable you to ask good questions. Hugs
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Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy.

I do not know what the future holds but I am glad I know who holds the future!

Thank you. Some days its

Submitted by Crystalkd on Sat, 09/19/2009 - 4:00pm.

Thank you. Some days its easier to deal with than others. I noticed after I posted this that I put it in the wrong section. I think it needs to be moved to the adult section. My major source of frustration at the moment is trying to get myself the testing I need. I'm on disability to start with so there's no way I can come up with the extra money. I can't seem to find any organizations to help. Any ideas would be helpful. After getting out of the hospital in May where I spent 9 days before they could get my BP under control I still don't know much more and at the current rate it seems like I'll be waiting longer. The docs are convinced that either way my time is limited. Why when they KNOW there is a serious problem it takes so long to figure it out and now money is getting in the way. This is ridiculous and tiring.
lorimar's picture

Welcome Crystal; There is a

Submitted by lorimar on Sat, 09/19/2009 - 5:17pm.

Welcome Crystal; There is a lot of support here. As far as helping with your finances, I don't know, have you tried MDA?I'm not sure what they do, but it might be worth looking into.......................Good Luck &God Bless, Lori:)
Tina_EvesMum's picture

Cristal I am so sorry that

Submitted by Tina_EvesMum on Sat, 09/19/2009 - 5:56pm.

Cristal I am so sorry that the testing is proving a financial bind, as I am in the UK I have nothing to offer on that topic other than my prayers.I do hope someone else can guide you to some financial asistance. As fo your post being in the wrong forum dont worry I will try to sort it. I have moderating skills for removing spam, ( and Lori's repetition lol) but will see if I can move you too...hold tight..Hugs
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Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy.

I do not know what the future holds but I am glad I know who holds the future!

Thank you guys. Sorry for

Submitted by Crystalkd on Sat, 09/19/2009 - 6:32pm.

Thank you guys. Sorry for the tone of the posts I'm more tired today and of course that clouds everything. I know everything will work out. It always does.
beck7422's picture

Hi Crystal, When I was in

Submitted by beck7422 on Sat, 09/19/2009 - 10:48pm.

Hi Crystal, When I was in college and the doctors basically gave up finding out what was wrong with me I named my monster "Miriam's Yucky Disease" or MYD for short. I called it that often enough out load to curse my way through an attack of paralysis that all my friends started calling my attacks MYD. :)

Hello everyone. I'm Paula.

Submitted by plosure on Sun, 09/20/2009 - 12:17am.

Hello everyone. I'm Paula. My daughter Audrey was diagnosed with Mito disorder in April, right after her 2nd birthday. Her symptoms are low muscle tone, speech delay...other than that...she does pretty well and is the happiest little girl I know. What is hard is not knowing where this all will lead. From everything I read, I cannot find anyone that sounds like Audrey. It would be nice to know...but I keep telling myself...that we have no reason than to be hopeful...no one can tell us what her future will hold. None of us know what our own futures hold...Audrey has an OT, PT and speech therapist that work with her on a weekly basis. Cognitively she seems to do well. She began taking steps a week after her second birthday and now can climb and run! I do not see any lack of energy. This seems to be common with most mito disorders. Is this uncommon for her not to have this issue?She does take CoQ10 but never had an issue with lack of energy before this.

I haven't even named this.

Submitted by Crystalkd on Sun, 09/20/2009 - 9:44am.

I haven't even named this. When I had the first big attack almost 3 years ago it seemed like I was going to the doctor every week. I was told it was stress but the shrink said it wasn't. Because of weight loss involved I was sent to a gastro who didn't really find anything. He thought at first that I had Ceilac Disease. While waiting for all the tests to come back I started the gluten free diet and felt better. Things slowly got better so I tricked myself into thinking it was over. Then a year ago my tiredness got a lot worse I knew I was in trouble. My GP and I tried to figure it out and get ahead of it then my stomach started hurting again. There was nothing really wrong there then at the end of April I started having problems talking and thinking and was very disoriented and was put into the hospital for syncope. I almost ended up in the ICU twice because even with fluids my BP was dropping so low. I always knew if it happened again it wasn't good. When the doc said what ever it was was progressive I could have told him that! I feel like I owe it to myself to do everything I can to figure it out.

lorimar's picture

Hello Paula, Never give up

Submitted by lorimar on Tue, 09/22/2009 - 1:08pm.

Hello Paula, Never give up Hope,I believe in Hope. Take one day at a time.Enjoy Audry,none of us know what the future holds,but I also have faith.......God Bless...Lori:)