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CT scan - some thickening of proximal duodenum?

Niks

Niks

Hi

Thought I'd let you all know that finally after 10 years we have a conclusive diagnosis. Jaime has Mitochondrial Disease, this is degenerative and affects all muscle tissue. Because her onset was as a teen, it is uncertain of the prognosis and how this will affect her..

Her main symptoms are still gastro and pain, but she her eye sight is starting to be affected and she has weakness down the left side with stroke like episodes at times causing bels palsy like symptoms and some temporary numbness, with slurred speech and also sometimes not being able to make sense of what she needs to say, not being able to put together sentences or find the right words. Luckily this hasn't lasted too long.

She has had absences and one full seizure, which she is finding very scary. She has a very good Mitochondrial team, who she is able to contact at any point. Just thought I'd let you all know, in case there is a similar case where it is so difficult to get a diagnosis. There must be more without diagnosis!

Sending love to all of you who supported us throughout the early days, with ideas and suggestions to help!

xxx
 
X

xmdmom

Thank you for posting a diagnosis. I am so sorry that it took such a long time to get an answer. I remember reading your posts and seeing how awful she felt and how hard it was, at times, for her to get doctors to take her symptoms seriously. It would be good if those prior doctors could know about this diagnosis.

I am glad she finally has an expert team who is accessible and I wish her all the best.
 
Maya142

Maya142

Moderator
Staff member
Your poor girl! I remember reading her story just as I joined the forum. I'm so sorry she had to suffer for so many years without answers - even with such serious symptoms. How is she feeling now, in terms of the pain and her GI symptoms?
I'm glad she has a great team of doctors - I hope they are able to help her.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Niks said:
Hi

Thought I'd let you all know that finally after 10 years we have a conclusive diagnosis. Jaime has Mitochondrial Disease, this is degenerative and affects all muscle tissue. Because her onset was as a teen, it is uncertain of the prognosis and how this will affect her..

Her main symptoms are still gastro and pain, but she her eye sight is starting to be affected and she has weakness down the left side with stroke like episodes at times causing bels palsy like symptoms and some temporary numbness, with slurred speech and also sometimes not being able to make sense of what she needs to say, not being able to put together sentences or find the right words. Luckily this hasn't lasted too long.

She has had absences and one full seizure, which she is finding very scary. She has a very good Mitochondrial team, who she is able to contact at any point. Just thought I'd let you all know, in case there is a similar case where it is so difficult to get a diagnosis. There must be more without diagnosis!

Sending love to all of you who supported us throughout the early days, with ideas and suggestions to help!

xxx
Click to expand...
I'm so sorry to hear this. It sounds very frightening. I'm sorry she had to get so bad before she got someone who sould take her seriously. Jaedyn has a diagnosis of Ehler's Danlos now, but her specialist who knows EDS has moved out of state.
 
Tesscorm

Tesscorm

Moderator
Staff member
I also remember what a long and hard time she had, dealing with the symptoms and getting no answers. I hope having an answer can help with treatments! And that her team can now respond to her symptoms and help alleviate and manage them.

While not the answer you would've wished for, I hope having a diagnosis also helps you in supporting her. Lots of hugs...
 
Tesscorm

Tesscorm

Moderator
Staff member
Carol, I hope that the new dx for Jaedyn helps explain her struggles too and help both you and her in alleviating the symptoms! Sending you luck in finding a new specialist who can help Jaedyn feel well!!
 
C

crohnsinct

Well-known member
Wow Mama's! You both have my undying admiration. I remember both journeys as it was yesterday and how much both of your girls suffered.

I also hope that having a diagnosis and the right physicians in place to help care for them brings some peace and comfort to you all.

Thanks so much for stopping in and updating us as your stories and outcomes will definitely help others along the way.
😘
 
Niks

Niks

Maya142 said:
Your poor girl! I remember reading her story just as I joined the forum. I'm so sorry she had to suffer for so many years without answers - even with such serious symptoms. How is she feeling now, in terms of the pain and her GI symptoms?
I'm glad she has a great team of doctors - I hope they are able to help her.
Click to expand...
Hi

Her GI symptoms are still the worst of everything, this is where she gets most of her pain, which is the main cause for her getting admitted to hospital, to get pain under control. Her main frustration is with the Doctors not understanding this, she is really hoping that with the Care Plan that the Mitochondrial team are putting in place that this will be easier in future.

xx
 
Niks

Niks

CarolinAlaska said:
I'm so sorry to hear this. It sounds very frightening. I'm sorry she had to get so bad before she got someone who sould take her seriously. Jaedyn has a diagnosis of Ehler's Danlos now, but her specialist who knows EDS has moved out of state.
Click to expand...
Really hope you find someone to help Jaedyn soon! It is so difficult when medical professionals don't understand how to help xxx
 
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