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Old 04-28-2009, 11:15 AM   #1
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Told Autoimmune Disease But No Diagnosis

Does anyone know what all these test results from a Lumbar Puncture mean?

High Elevated CSF Protein levels
Elevated CSF % Seg
Elevated CSF % Lymph
Low Angio Convert Enz levels
Low Anion Gap levels
Low IgG/Alb Index levels
Low Immunoglobulin levels
Elevated Sed Rate
Elevated CK

I have had years of testing, many blood tests, CT's, MRI's, Lumbar Puncture, Muscle and Nerve testing, Muscle biopsy and still no specific diagnosis. Once I was told I had Myopathy but that is not specific, then I was told it was a Autoimmune disease. I have chronic pain all over my body, including muscle and joint pain, weakness, fatigue, and shortness of breath. If anyone has any information it would be greatly appreciated.

Last edited by bestoldies04; 04-30-2009 at 07:24 AM.

 
Old 05-04-2009, 05:51 AM   #2
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Re: Told Autoimmune Disease But No Diagnosis

could it b sle lupus there are lots of immune disorders u just sound similar to how I feel
dixy

 
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Old 05-04-2009, 09:07 AM   #3
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Re: Told Autoimmune Disease But No Diagnosis

I have had so many tests done in the past 8 years, but if I remember correctly I thought Lupus was the very first test they did and it was negative. The Lumbar Puncture showed no MS. The Rheumatologist said it was possible that I have acquired Scleroderma which is what my husband has. I first told them no way but some symptoms lately makes me wonder. I can understand not getting a diagnosis if all tests came back negative or normal but they are not coming back normal. I am thinking about seeing a Immunologist to see if they can figure it out based on test results. I would like to regain some quality of life if it exists anymore.

 
Old 05-04-2009, 02:58 PM   #4
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Re: Told Autoimmune Disease But No Diagnosis

shortness of breath does it hurt to take deep breath or do u get breathless just talking. could b Pulmonary Hypertention. RHC test will show if u have
take care
dixy

 
Old 05-05-2009, 07:17 AM   #5
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Re: Told Autoimmune Disease But No Diagnosis

I have COPD so I would say that is why I get shortness of breath. I do have two leaky heart valves I don't think this would cause it but who knows. My blood pressure is elevated some because the heart is slightly enlarged. It was suggested that I go to Mayo Clinic but I am not convinced they can do anymore than one of the teach hospitals in the Chicago area. I am willing to go if I thought they could help me.

 
Old 05-05-2009, 07:20 AM   #6
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Re: Told Autoimmune Disease But No Diagnosis

dixy,

Thanks for your replies, I will definitely look into the things you suggested I just might come up with something.

 
Old 05-06-2009, 09:36 PM   #7
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Re: Told Autoimmune Disease But No Diagnosis

I just took labs to a rhumotologists today from my primary care physicians. She did not seem impressed. Labs said 70 percent positive for connective tissue disease. I was convinced I had systemic lypus. She almost acted indignant with me. I hurt like heck, have had pustular psorasis on my feet fr 14 years. I have fluid on my hip. I thought I fit the profile to a T. Crazy as it is I was even glad. WOW maybe a diagnosis after 17 years. BACK TO THE DRAWING BOARD

 
Old 05-26-2009, 08:54 PM   #8
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Re: Told Autoimmune Disease But No Diagnosis

Quote:
Originally Posted by bestoldies View Post
Does anyone know what all these test results from a Lumbar Puncture mean?

High Elevated CSF Protein levels
Elevated CSF % Seg
Elevated CSF % Lymph
Low Angio Convert Enz levels
Low Anion Gap levels
Low IgG/Alb Index levels
Low Immunoglobulin levels
Elevated Sed Rate
Elevated CK

I have had years of testing, many blood tests, CT's, MRI's, Lumbar Puncture, Muscle and Nerve testing, Muscle biopsy and still no specific diagnosis. Once I was told I had Myopathy but that is not specific, then I was told it was a Autoimmune disease. I have chronic pain all over my body, including muscle and joint pain, weakness, fatigue, and shortness of breath. If anyone has any information it would be greatly appreciated.
Just saw you post. Your problems sound very familiar to mine. After years of test and no diagnosis you feel and sound helpless. I completely understand. Some of your lab results are related to lupus lab work but could also mean any auto immune for all I know. What a shame we spend so much time and money on medical care and have to beg someone to tell us what it means. Good luck and God bless.

 
Old 06-02-2009, 08:23 AM   #9
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Re: Told Autoimmune Disease But No Diagnosis

Hi If you have Lupus b aware of people trying to sell you meds to boost your immune system as its the last thing you need to do as it makes you worse. Check out The Lupus Site. I find it is good also loads of info. And live chat if you need to ask questions someone might have an answer 4 u

Take care

dixy



Quote:
Originally Posted by bestoldies View Post
dixy,

Thanks for your replies, I will definitely look into the things you suggested I just might come up with something.

 
Old 06-08-2009, 06:22 AM   #10
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Re: Told Autoimmune Disease But No Diagnosis

Quote:
Originally Posted by bestoldies View Post
I have COPD so I would say that is why I get shortness of breath.
Have you noticed that certain things, or foods, or times of the day, sets off, or increases your breathing difficulties or pain?

Quote:
I do have two leaky heart valves I don't think this would cause it but who knows. My blood pressure is elevated some because the heart is slightly enlarged.
When there is any kind of heart defect, the body tends to over-produce NeuroHormonal and Immune System chemicals. These "helpful" body chemicals can become damaging to nerves, muscles, bones, glands, organs and cause higher blood pressure and heart rhythm disturbances, etc. if not blocked or inhibited through medications or lifestyle and environmental changes.
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Old 06-08-2009, 09:06 AM   #11
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Re: Told Autoimmune Disease But No Diagnosis

That is very interesting, I was beginning to wonder if some problems could cause another. I would like to have the Biophysical 250 blood test hoping it would give some answers but it is so expensive. Thanks for the information.

 
Old 06-09-2009, 07:23 AM   #12
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Re: Told Autoimmune Disease But No Diagnosis

I am no Dr. but, with trouble w/ ur heart valves, and all of the abnormal test results, I would demand another test for SLE Lupus. That sounds like my story, and I went undiagnosed for years before I finally caught a break. (I guess that's what it was, but it feels more like a curse!)

For me it was more frustrating knowing something was seriously wrong, no one believing in me and not knowing how to fix it. After I was dx w/ lupus and fibromyalgia, it brought a new set of battles ahead but at least I knew what I was dealing with and was relieved to find out it was not 'all in my head'!!!

 
Old 06-26-2009, 11:15 AM   #13
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Re: Told Autoimmune Disease But No Diagnosis

I d love to find out about this product also.
thanks!

 
Old 06-26-2009, 04:02 PM   #14
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Re: Told Autoimmune Disease But No Diagnosis

I also have autoimmune disorder without a diagnoses
i know i feel really BAD a lot of the time ,but would like to know what im dealing with ,for me it kind of went from lyme s desease,to authritis,to osthioporosis,and a severe vitamin d defficencie,

Last edited by annelieserivera; 06-26-2009 at 04:03 PM. Reason: TYPING ERROR

 
Old 06-30-2009, 04:56 AM   #15
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Re: Told Autoimmune Disease But No Diagnosis

Hi,
Thanks for the replies, I was thinking the same thing about being retested for Lupus. It seems out of the many diseases the symptoms keep coming back to Lupus.

 
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