help

[kwaltmire]

I am looking for help. I have been searching for a diagnosis for many years and have had some of my symptoms for 12 years or so. I have not realized some of my symptoms until i was talking with a nurse at my hematologists office today for my iron infusions.dry eyes (itchy)sensitivity to smoke and fumesdifficulty chewing or swallowingrecurrent cavities, dental decay ( I have dentures and have had them for two years now)dry cougheye painreduced tears (i never have cried much)joint and muscle painmorning stiffnessincreased thirstgreat fatigueitchy feeling in the eyesvisual disturbance in the eyesincreased thirstcoldness in the hands and feet ( I have always had as long as i can remember)and other areas of dryness. I have been referred to the Cleveland clinic and so far no answer or call from them. I need help and I am getting desperate to figure out my issues. I have been tested for RA, MS, and Lupus. I had one ANA come back abnormal and they reran it and then it was negative. Everything is coming back negative and some of these symptoms like i said i would have never thought they were a symptom or was linked together and i realize they still might not be, this is intervening with my life.Thank you for your time and any direction would be great.

[finallyadx]

Hi kwaltmire  there is a new, fast test for sjogrens - someone else has referenced it on another post here but I am sure you can google it and it will come it.  You should ask your rheumy for this test.  Sjogrens does not always show positive results though so hopefully you can find one that will treat for symptoms.

This is a great board to belong to - you will find lots of support and information here and everyone has a different perspective and can offer so much to any of your questions. 

Sounds like you are a candidate for sjogrens but I am not a medical professional.

I had been sick for years as well, with no answers until January - I found a dr who told me he would not stop looking until he had an answer for me - sjogrens it was.  Although I was not pleased to receive the diagnosis (I did test positive, but many on this board have not and do not)!, I was pleased to finally have an answer so that I could begun some treatment to lessen my symptoms.

Often AI's masquerade themselves and do not become apparent in bloodwork for years, sometimes they may never truly show, but if you can find a compassionate, educated rheumy who knows that not all AI's show positive in everyone, you may be able to start some type of treatment to try to get some relief.

I have been taking plaquenil since January and have noticed an improvement in many of my symptoms.

If you need to switch drs, then do so - I know easier said than done, but you have to be your own advocate when it comes to your health and being sick for years with no answers and no resolve at all is NOT OKAY.

Sending healing thoughts and your prayers you way.

Keep us posted.

[Joe S.]

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[quietdynamics]

I have been referred to the Cleveland clinic and so far no answer or call from them. I need help and I am getting desperate to figure out my issues. I have been tested for RA, MS, and Lupus. I had one ANA come back abnormal and they reran it and then it was negative. Everything is coming back negative and some of these symptoms like i said i would have never thought they were a symptom or was linked together and i realize they still might not be, this is intervening with my life.Thank you for your time and any direction would be great.

kwaltmire  Welcome, to the site and I hope we can help you.

Call the Clinic to see what the hold-up is....are they waiting for more labs to be sent?

Even in the general pop. some people can have a low positive ANA (and be disease free)

So other testing needs to be done...stones looked under...dots--connected and it does take time. 


Here is info on the "Early Test"  It also has the study which you can give to your Doctor. This test has been discussed at the Sjogrens Conference (specialist dedicated to this disease)
I hope that this helps you..

Please look around for information on how others are managing dryness with OTC products and what they have found help...what does not. Diet changes, etc.

Each persons' experience with Sjogens is unique, some limited to sicca symptoms , others systemic, therefore differing treatments. Not all Sjogrens patents progress.

[Carolina]

Hi kwaltmire:

You're in the right place.

Welcome.

You were referred to the Cleveland Clinic, but you haven't been there yet?  Is that right?

I would follow up on that referral and try to get to the clinic, if you haven't seen a Rheumatologist (I assume that's what you would see) at the Cleveland Clinic yet.

Many of us do NOT meet the classic standards for Sjogren's Syndrome (or any other auto immune condition).   I for one never tested positive for any auto immune condition.  But as long as my symptoms were addressed with medications and other treatments, I managed.  I did have a fabulous first Rheumatologist who diagnosed Sjogren's without the positive tests.  She was right, of course.

The key is to get the help you need to feel better, and to cope with your life.

Recently I was found to have ANOTHER kind of immune condition which is the cause of all my autoimmune conditions and also is the reason I do NOT test positive for any of the autoimmune conditions.

Isn't that truly weird?

Several of us also have this other kind of immune condition, which underlies our autoimmune problems.  It is Primary Immune Deficiency Disorder.  Our immune system is deficient, but even in its deficient status, it attacks our own body, but not outside invaders.

Talk about unfair!

The world of immune mediated conditions (auto immune/immune deficiency) is complex, not well understood by the medical field, and requires patience and persistence to address.

Ask your questions, tell us what is going on, and we will all do our best to help you.   We've been given so much here on this forum, it's the least we can do to try to help others.

Hugs

Elaine





 

[Alyson Wissinger]

Elaine - can you tell me more about Primary Immune Deficiency Disorder? How is it diagnosed? What are the symptoms? Thanks! I have Autoimmune Neutropenia and have been very sick in recent months...and right now! But I am having a difficult time getting an AI diagnoses even though I have lots of symptoms.

[Carolina]

Hi Alyson,

I've posted extensively here about PIDD, and my specific kind, CVID.  If you have questions please ask.

Essentially what an Immune Deficiency means is that your body does NOT make an adequate amount of immune factors.

I saw a new Rheumatologist in 2011, on the Faculty at Duke Medical School, in Durham.

She ran the 'usual tests' for every autoimmune condition that there's a test for, and she also tested my immune system.  My immune system had never been tested before.

Come to find out that my immune system (which is attacking my body of course) is actually DEFICIENT.  My deficiency may be genetic, but the actual genetic action for my deficiency hasn't been identified yet.

Several of my immune factors are very low.  And when my immune system is presented with the vaccine for various types of pneumonia, I don't develop immunity! 
This means that I am open to all sorts of infections.  The diagnosis of my Primary Immune Deficiency Disorder (PIDD) is CVID.

About 1 in 25,000 - 75,000 people have this disorder.

About 20-25% of people with CVID develop autoimmune conditions!

The ONLY treatment is to take 1000 blood donations, extract the immune factor IgG, and make it into one month's infusion, and infuse it into the person who lacks immunity.  The donors are well screened and paid to donate.

The gives the patients 'borrowed' immunity.  But this procedure has to be done at least monthly for the rest of your life, since the borrowed immune factors don't last very long.

Because it takes 1,000 blood donations to make one treatment, and because the purification process is very complex, one dose costs about $10,000 dollars.  So the total cost is about $120,000/year.

And of course, you need that one dose a month for the rest of your life.   This is done at an infusion center IV, and it takes the better part of a day.  It is called IVIG.

I have the infusions subcutaneously at home, with smaller dosages done weekly, with a small pump, through the skin.  This is called SubQ.  The home infusions  started with an infusion therapist for the three weeks and next week I will do them myself.  They take about 2 hours at home each week.

Obviously my insurance covers about 99.9% of this or I couldn't afford them.

So I have a condition which wasn't found until I was 69, and I've spent a great deal of time deciding to pursue it, and accept the recommendation of my immunologists to start treatment.

My Immunologist is a research physician at Duke University.  She hopes that not only will my immune factor IgG improve, but my entire immune system, which is 'ramped up and working overtime" precisely because it is so deficient, will calm down and stop attacking my body so badly.

So now I have this part of the journey done, but the journey never ends.  Well it ends, of course, but perhaps by treating me, it won't be a terrible infectious pneumonia, or lymphoma, which is possible with both CVID and Sjogren's.

Please ask any questions you have.  The Immune Deficiency Foundation has a wonderful website with lots of information.

There are many here with autoimmune conditions who also have CVID and have infusions or IV of Gamma Globulin.

Hugs

Elaine

[Alyson Wissinger]

Thanks for the explanation Elaine. I was once an outpatient at Duke and was on IVIG for a good while. I have Neutropenia and back in those days I stayed sick all the time. Then after about ten years I seemed to be ok for a number of years.  When my Celiac Disease started ramping up a few years ago I started having problems with infections again. Now we know that Neutropenia itself should not be causing so many problems with immunity. I'm really having a difficult time trying to fight off infection while at the same time my system is attacking my body. My Hematologist has tried to hold me together with Neupogen injections while my Rheumatologist tries to diagnose me but honestly I feel like there's something else going on that we are not addressing. Again, thanks for the info. I'm going to read up and get out my labwork and see if I see some connection.