The snap crackle pop knee and muscle issues...

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Angnix
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12 Aug 2020, 7:25 pm

I've been having issues lately with my right knee, in fact thinking about it it started about 20 years ago! When I was a teenager, that is when the knee pain and snap crackle poping started..
I went to the doctor back then for the knee and also for a rash on my face... Which led to Lupus testing and they did find an ANA titer then with further testing they came to the conclusion it wasn't serious! I also have severe muscle weakness, all my life... Also sometimes my back kills me and it is right now, grrrrr...

Years later, a doctor thought it was some sort of "connective tissue disease" but my insurance barred more testing. Later I developed thyroid disease, and the doctor found a very high amount of ANA and concluded it was autoimmune.

I see an Orthopedic doctor early next month for the knee, should I talk about this with them, or should I discuss with my general doctor about this and go to a different specialist... I know you guys can't help much but I'm not sure which direction to go... I'm just getting tired of all this medical stuff...

Tomorrow I see the gastroenterologist for gut stuff... I hope they finally help with the gastroparesis... I still can't eat normal amounts of food without feeling sick...


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Jakki
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12 Aug 2020, 7:47 pm

Angnix wrote:
I've been having issues lately with my right knee, in fact thinking about it it started about 20 years ago! When I was a teenager, that is when the knee pain and snap crackle poping started..
I went to the doctor back then for the knee and also for a rash on my face... Which led to Lupus testing and they did find an ANA titer then with further testing they came to the conclusion it wasn't serious! I also have severe muscle weakness, all my life... Also sometimes my back kills me and it is right now, grrrrr...

Years later, a doctor thought it was some sort of "connective tissue disease" but my insurance barred more testing. Later I developed thyroid disease, and the doctor found a very high amount of ANA and concluded it was autoimmune.

I see an Orthopedic doctor early next month for the knee, should I talk about this with them, or should I discuss with my general doctor about this and go to a different specialist... I know you guys can't help much but I'm not sure which direction to go... I'm just getting tired of all this medical stuff...

Tomorrow I see the gastroenterologist for gut stuff... I hope they finally help with the gastroparesis... I still can't eat normal amounts of food without feeling sick...


I hope get some relief from your symptoms , it sounds as if you might have something very similiar to lupus .


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auntblabby
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12 Aug 2020, 8:18 pm

OP: it is my considered opinion from personal experience, that you should ASAP cut out gluten [wheat] and gliadin [oats] from your diet, leaky gut syndrome is a thing that may be affecting you. :idea:



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12 Aug 2020, 8:25 pm

auntblabby wrote:
OP: it is my considered opinion from personal experience, that you should ASAP cut out gluten [wheat] and gliadin [oats] from your diet, leaky gut syndrome is a thing that may be affecting you. :idea:



This sounds like good advise to follow up on ..... ! Imho


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blooiejagwa
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12 Aug 2020, 8:28 pm

oh i know someone who has Ehler Danlos syndrome, she described what is in the title of this thread.
I hope you do better in getting an answer and treatment that helps
Auntblabby I am surprised you know about leaky gut syndrome! Many doctors don't even know of it (or maybe they forgot).


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auntblabby
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12 Aug 2020, 9:09 pm

blooiejagwa wrote:
oh i know someone who has Ehler Danlos syndrome, she described what is in the title of this thread.
I hope you do better in getting an answer and treatment that helps
Auntblabby I am surprised you know about leaky gut syndrome! Many doctors don't even know of it (or maybe they forgot).

found out about it on my own arthritis journey.



Angnix
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12 Aug 2020, 9:37 pm

I looked up leaky gut... Many sites say it isn't real... But on the other hand I have most of the symptoms... :?


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blooiejagwa
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12 Aug 2020, 9:37 pm

Angnix wrote:
I looked up leaky gut... Many sites say it isn't real... But on the other hand I have most of the symptoms... :?


my son's doctor who works at sick kids too says it is real


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auntblabby
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12 Aug 2020, 10:04 pm

unfortunately it says tomatoes worsen it. drat. all the good things in life are unhealthy at best.



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13 Aug 2020, 12:28 pm

For what it’s worth , have about lectins and leaky gut . Foods that contain or are high it lectins , supposably effect leaky gut. In a bad way .


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Noca
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13 Aug 2020, 3:47 pm

Did your GI doctor finally give you anything for gastroparesis today?



Angnix
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13 Aug 2020, 5:01 pm

Noca wrote:
Did your GI doctor finally give you anything for gastroparesis today?


She wanted me to have regulin, but sadly it doesn't play well with my psych meds...

Also my liver has been getting worse over the last few months, she thinks it's fatty liver...


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blooiejagwa
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13 Aug 2020, 5:08 pm

auntblabby wrote:
unfortunately it says tomatoes worsen it. drat. all the good things in life are unhealthy at best.


yup .. and fresh tomatoes with salt and pepper, or in a toasted sandwich (with butter), are one of life's pleasures.


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13 Aug 2020, 5:23 pm

The digestive track is most important of all , it literally regulates everything . Nourishes all the other Systems.
Medicines are fine but not always good for the digestive track. Feel for your situation , I hope , it gets better,
Whichever way you go ...... sometimes recovering your health is difficult to get back into shape .
And I am no shining example , I think a great deal of Aspies have multiple co-morbidities.


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Angnix
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13 Aug 2020, 5:52 pm

I just sent a message to my doctors. The gastro doctor wanted to do more liver tests and autoimmune tests in November, but I'm wondering if they would do that testing now. I explained the situation. I hope it is considered a reasonable request.


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13 Aug 2020, 8:14 pm

Angnix wrote:
I just sent a message to my doctors. The gastro doctor wanted to do more liver tests and autoimmune tests in November, but I'm wondering if they would do that testing now. I explained the situation. I hope it is considered a reasonable request.


Wonder why the delay. ?


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