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Looking for a diagnosis for dd
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amother




OP
 

Post  Mon, Jun 01 2020, 6:54 am
We’ve been to many doctors but have not gotten anywhere...
(She’s in her teens and this has been going on for a few years. Lately it’s worse than ever)

Symptoms are-
Fatigue - it’s severe
Headache- almost every day
Facial pain around jaw bone area (took her to dentist and oral surgeon for that)
Itchy skin all around her eyes
Stomach pains (cramps and loose bowels) - multiple times a week
Sore throat
Pale skin
Underweight

The only thing we’ve accomplished through multiple blood tests are:
Low vitamin D
Lower side for iron but not out of range
Epstein bar in the blood but not active now (numbers are low)

It’s not mono or a thyroid issue. It’s not celiac or crohn’s disease.

She is taking lots of vitamins now but she’s still not functioning. She’s in bed a lot in pain and exhausted.

I think we need to look for something that doctors don’t commonly test for.
Her condition is effecting her quality of life and is going on for way too long.
Looking for ideas. Possibly genetic diseases that we have not thought of yet...
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amother




Slateblue
 

Post  Mon, Jun 01 2020, 7:03 am
Pancreatic insufficiency?
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Frumwithallergies




 
 
 
 

Post  Mon, Jun 01 2020, 7:51 am
Is she regressing neurologically?
How old is she now and how old was she when it started?
If they found Epstein Barr in the blood, then she had mono at some point in her life; it can take a long time to recover.

Does anyone else in the family get headaches? (Regular headaches).
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schmoois1




 
 
 
 

Post  Mon, Jun 01 2020, 7:57 am
Where are you located so we can recommend some good doctors?
Also, have the doctors considered something as simple (but very difficult to treat) as chronic migraine? Lyme disease?
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simcha2




 
 
 
 

Post  Mon, Jun 01 2020, 7:58 am
Celiac
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Amelia Bedelia




 
 
 
 

Post  Mon, Jun 01 2020, 8:08 am
simcha2 wrote:
Celiac

Op claims her dd tested negative for celiac.
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Amelia Bedelia




 
 
 
 

Post  Mon, Jun 01 2020, 8:09 am
schmoois1 wrote:
Where are you located so we can recommend some good doctors?
Also, have the doctors considered something as simple (but very difficult to treat) as chronic migraine? Lyme disease?

This. Have her tested for Lyme.
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simcha2




 
 
 
 

Post  Mon, Jun 01 2020, 8:12 am
Amelia Bedelia wrote:
Op claims her dd tested negative for celiac.


Missed that. Though if she only did the blood test it's not accurate. It needs an endoscopy.
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amother




Ivory
 

Post  Mon, Jun 01 2020, 8:17 am
Lupus?
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amother




OP
 

Post  Mon, Jun 01 2020, 8:24 am
amother [ Slateblue ] wrote:
Pancreatic insufficiency?


I never heard of this. Is this something that would have showed up in regular blood tests?
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amother




Saddlebrown
 

Post  Mon, Jun 01 2020, 8:26 am
Has she tried an allergist?I’m

Also, a lot of these center around the GI- find a good GI to do a full scope.
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amother




OP
 

Post  Mon, Jun 01 2020, 8:28 am
Frumwithallergies wrote:
Is she regressing neurologically?
How old is she now and how old was she when it started?
If they found Epstein Barr in the blood, then she had mono at some point in her life; it can take a long time to recover.

Does anyone else in the family get headaches? (Regular headaches).


I was surprised when Epstein Barr showed up a few years ago in the blood work since I didn’t know she had mono. She gets sick often so I guess at one point it was mono and we didn’t know. The Epstein Barr first showed up in the blood work around 2-3? years ago. At first the numbers were higher but they have gone down and it’s not active now.
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amother




Blue
 

Post  Mon, Jun 01 2020, 8:29 am
My friend's daughter had this and it was Gauchers. Be aware those symptoms can also be caused by an underlying pyschological condition so look into that. Also, some people just have headaches all the time so maybe if you eliminate one or two you can find the route of thr issue.
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amother




Blue
 

Post  Mon, Jun 01 2020, 8:30 am
amother [ OP ] wrote:
I was surprised when Epstein Barr showed up a few years ago in the blood work since I didn’t know she had mono. She gets sick often so I guess at one point it was mono and we didn’t know. The Epstein Barr first showed up in the blood work around 2-3? years ago. At first the numbers were higher but they have gone down and it’s not active now.


Almost everyone has an epstein barr infection by the time they reach adulthood. Most of the time it is very mild in childhood like the common cold.
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amother




OP
 

Post  Mon, Jun 01 2020, 8:30 am
schmoois1 wrote:
Where are you located so we can recommend some good doctors?
Also, have the doctors considered something as simple (but very difficult to treat) as chronic migraine? Lyme disease?


We are in the tri state area.
Lyme disease was tested for.
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amother




OP
 

Post  Mon, Jun 01 2020, 8:35 am
Amelia Bedelia wrote:
Op claims her dd tested negative for celiac.


She tested negative for celiac. The gastroenterologist we’ve been seeing says that certain things will show up in the blood work he ordered to indicate inflammation. Since there is nothing showing in the blood work he doesn’t think it’s necessary to do an endoscopy. He is treating this as IBS (medication) but it is not helping her fatigue or headaches.
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amother




OP
 

Post  Mon, Jun 01 2020, 8:35 am
amother [ Ivory ] wrote:
Lupus?


I wonder? What type of doctor would we go to for this?
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amother




OP
 

Post  Mon, Jun 01 2020, 8:37 am
amother [ Blue ] wrote:
My friend's daughter had this and it was Gauchers. Be aware those symptoms can also be caused by an underlying pyschological condition so look into that. Also, some people just have headaches all the time so maybe if you eliminate one or two you can find the route of thr issue.


What kind of doctor diagnosed Gauchers?
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amother




OP
 

Post  Mon, Jun 01 2020, 8:40 am
amother [ Saddlebrown ] wrote:
Has she tried an allergist?I’m

Also, a lot of these center around the GI- find a good GI to do a full scope.


I forgot to mention that she has some mild skin issues. We have seen a dermatologist who tested a full allergy panel.
Apparently my GI is considered good and comes highly recommended so I am reluctant to switch to another one.
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WitchKitty




 
 
 
 

Post  Mon, Jun 01 2020, 8:54 am
No other ideas, but did you do Dor Yesharim testing? If yes, there are like 15 things you can take off your list.
I hope you find the cause as fast as possible. Hatzlacha!
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