Author Topic: Desperately Seeking Diagnosis!  (Read 5523 times)

Patze

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Re: Desperately Seeking Diagnosis!
« Reply #15 on: November 07, 2010, 02:04:34 PM »
Hi Diane,

Let  me also welcome you to the SJS World and family!  Please look around the board as there are a ton of topics that you might find very interesting.

I'm sorry that the first comment from the doctor was about drinking, that must have hurt so.  But I'm so glad that she does seem be becoming pro active and that's always a plus.

Oh yes, the brain fog and exhaustion can be oh so frustrating.  I don't know about you, but having to work full-time and with brain fog and exhaustion can be so daunting that I don't even want to get out of bed in the morning some days.

Hang in there and I'll keep the fingers crossed that the blood work points to a diagnosis.

Take care of yourself -

Patze
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Diane54

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Re: Desperately Seeking Diagnosis!
« Reply #16 on: November 08, 2010, 05:14:56 AM »
Got a few of my blood tests back...the only thing different is my Lymph% is slightly elevated and my Liver enzymes are elevated also. The doctor said she is awaiting the ANA tests. I am so extremely exhausted and dry that I really think I am going crazy. I have been on Paxil for years and still feel really anxious right now!  I am going to make my eye doctors appointment today....I have a feeling that my ANA will come back negative then this doctor will just drop the ball. If she would read back my history she would see that I have had so much go on with this body. I am praying for a diagosis so I can get on with my life without feeling like a hypocondriac!
Sjogren's diagnosed Dec 20, 2010, Hypothyroid, Diabetes 2, Autoimmune Hepatitis, Mitral Valve  Prolapse, Gerds, Antiphospholipid Syndrome,  Synthroid, Paxil, Prilosec, Evoxac, Plaquenil, Tramadol, Simvistatin, Restasis, Baby Asprin, vitamin D, Januvia, Amlodipine, Gabapentine

Diane54

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Re: Desperately Seeking Diagnosis!
« Reply #17 on: November 09, 2010, 12:55:12 PM »
Well my ANA did come back negative....the doctor I saw is at a loss.......A few years ago I had a liver biopsy that diagnosed me with AutoImmune Hepatitis yet the ANA was negative on that.......is blood work the be all end all with this disease?
Sjogren's diagnosed Dec 20, 2010, Hypothyroid, Diabetes 2, Autoimmune Hepatitis, Mitral Valve  Prolapse, Gerds, Antiphospholipid Syndrome,  Synthroid, Paxil, Prilosec, Evoxac, Plaquenil, Tramadol, Simvistatin, Restasis, Baby Asprin, vitamin D, Januvia, Amlodipine, Gabapentine

Kerrikins

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Re: Desperately Seeking Diagnosis!
« Reply #18 on: November 09, 2010, 01:30:50 PM »
It doesn't always have to be the end, I guess it depends on the doctor. Many times a Dr will go ahead and treat your symptoms whether you end up getting diagnosed or not. My rheum personally will diagnose or treat without the ssa/ssb and he doesn't recommend lip biopsies, but you do at least probably have to have the +ana. He says only 40% of people have the ssa/ssb antibodies and so most people with SJS would be suffering if they were denied treatment based on bloodwork....all that to say, your dr may gather from these tests that you don't have an AI disorder but may explore treatment for your symptoms anyway. Just because you aren't dx doesn't mean you aren't sick, and hopefully he or she will try to figure out what else it could be. Best wishes,
Kerrikins

inga

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Re: Desperately Seeking Diagnosis!
« Reply #19 on: November 09, 2010, 02:12:20 PM »
Diabetics are at very high risk for small fiber neuropathy, sensory and autonomic.  I would ask for a skin biposy.  SFN can cause a lot of misery.

Joe S.

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Re: Desperately Seeking Diagnosis!
« Reply #20 on: November 09, 2010, 04:07:15 PM »
According to my endo today you are wrong. SFN is not impacted by diabetes. I am tired of listening to her undocumented statements. She also informed me that because I am taking insulin now, My retinopathy and neuropathy will get worse. But she does not know why.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
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inga

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Re: Desperately Seeking Diagnosis!
« Reply #21 on: November 09, 2010, 04:17:19 PM »

http://diabetes.niddk.nih.gov/dm/pubs/neuropathies/

http://www.mayoclinic.com/health/diabetic-neuropathy/DS01045

http://www.ccjm.org/content/76/5/297.full

http://diabetes.diabetesjournals.org/content/53/3/769.full

I could post citations all nite long.  Glucose Dysregulation one the cause of PN.  I would not doubt any acidosis of any kind is a reason for small fiber nerve loss.



Sicca is also caused by diuretics, since they are very drying.