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don't know what to do
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don't know what to do

Hopefully someone will have some tips for me.  I have a history of pneumonia, asthma, migraines, numbness, tingling, dry eyes, dry mouth, everything that can be dry is :)...... now I have had pneumonia for over a month, been on two antibiotics.  I am still short of breath, but dr's don't hear anything like pneumonia, so I guess it is asthma.  

Anyway, years ago a Dr mentioned Sjogren's to me.  I even went thru a period of falling because of numbness in my leg.  They do see a small stroke in the MRI but we don't know the effect it had (I guess).  My leg is better.  I have trouble with weakness in my arms.  I have elavated liver test---AGT ect that would indicate biliary duct issues, but the biopsy is normal.  Also some of my kidney test are elavated.  No one  seems to worried but I just feel terrible....fatigue, migraines.........

It just seems there is something going on how do I get to the bottom of this?
Thanks
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Hi.
You need to see a good rheumatologist, this sounds very much like Sjorgens syndrome to me.
Sjorgens, can affect the internal organs , like the kidneys, liver lungs and heart. etc.

Have you been tested for Sjorgens, with bloodtests, because if the come back negative, then they can do a lip biopsy for Sjorgens also, which can be a better diagnosis for Sjorgens syndrome.

Hope this has helped, sorry to hear you have been battling pnuemonia (pneumonia) for a month, im in sympathy, i had it in march this year and had three chest x-rays showing a shadow, i am still chesty at times now.


Maybe the pnuemonia (pneumonia) was caused by the underlying auto-immune issues.

They also do tears, for the dry eyes, and also for the dry mouth maybe you should ask your doctor,plus a referral to a rheumy.
Good luck
Nicola
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764912_tn?1322715443
Thank you so much.  I feel very much like it is something more....it seems to me like the pneumonia is related to something going on....it just doesn't seem normal to have liver tests, kidney tests, ANA ect all not normal but not have a DX....

Thank you for your help I will push harder and hope and pray I find a good Rheumatologist.

I bet it is frustrating for you also.  Thank you for your comments and help.
Tracy
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Avatar_f_tn
You are very welcome, just glad i could assist.
I do feel maybe the pnuemonia (pneumonia) was triggered by an underlying problem.
You can have a sputum test, to find if it is a bacterial pnuemonia (pneumonia), just so you get the right antibiotic, to treat it.

I didnt know you had a positive ANA, anti-nuclear antibody.
You should definately push for a rheumy referral, especially with showing sicca

symptoms.

The thing is also when you have one auto-immune disaese (disease), it opens the door, for the others to join.

Have you go the number on the ANA, and the pattern?

I hope you keep well, and if you need anymore help, just give me a shout.
Nicola
If you have post them,  
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Avatar_f_tn
Hi. again.
Just been reading about your family history regarding strokes, and heart attacks, at a very young age.
Your family sound like mine, we are a family of strokes , heart attacks, and migraines, etc.

But we have all got the Antiphospolipid Syndrome. know as APS-Hughes syndrome.
You can test for this with two simple bloodtests, and you only need one of them to be positive.
The tests are LA which is Lupus Anticoagulant. and
Acl, which is Anticardiolipin, antibodies.

Headaches, can be a big factor, in APS, and so can strokes, and seizures,

APS, can also overlap with Sjorgens Syndrome too.

Maybe look into both off them, to rule out diagnosis for APS, and Sjorgens, at the same time.

I have APS, along with Lupus.
My headaches are caused by the APS.

I hope you have a few things to be going on with, if you need anymore help, let me know.
Nicola
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764912_tn?1322715443
Wow, maybe we are related...:)...................  They always seem to say no on the Lupus.  I just get discouraged and give up. My sister and grandmother have/had Lymphoma also.

How are your Dr's ?  
Thanks again,
Tracy
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Avatar_f_tn
Thankyou for the note.
I feel happy when i can help someone.

I would definately ask to be tested for APS,,,,,,
Also you can have a lip biopsy for Sjorgens....

It has taken me twelve years to find the right doctors, only due to being mis-diagnosed for 12 years with MS.
Now i have APS-Hughes, and Lupus. along with graves disease, my thyroid.

I have to travel 400 miles to go to the best doctors in London for Hughes-Lupus.
I go to St Thomas,s, were the best doctors are, but it took me a lot off finding out to actually find them.
They are worth the journey though.

Good luck

Nicola
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