Author Topic: Recommendations on next steps  (Read 925 times)

KindMama

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Recommendations on next steps
« on: June 07, 2018, 05:08:19 PM »
Hello All,

I can't tell you how helpful this board has been in helping me understand this condition, gain recommendations on what doctors to see, tips to manage symptoms, etc. Thank you everyone!

Now for my story.

I am a 37 year-old woman with two children. After my first child, I discovered I had Graves disease. It has been a pretty manageable disease (the eye issues were the worst part, but have since resolved). About 7 months after my second child, I started having dry mouth and dry eyes. Since I already had an autoimmune disorder, I thought perhaps it was Sjogren's and got tested (ANA, SSA, SSB, CRP, ESR). All came back negative. An ophthalmologist diagnosed me with mild dry eye last summer and I use eye drops periodically. I did see a rheumatologist, who did more tests for Lupus and RA, and all came back negative. I also started having vaginal discomfort. Not necessarily dryness, but what I now think is vulvodynia (irritation, burning, stinging, feeling like you have to pee). Of course, went through lots of tests for that and no UTI, no yeast, no STD. I did have very low estrogen as I was still nursing my child, so I thought maybe that was contributing. But, I've had my period back for five months, am no longer nursing and I'm still dry as ever.

My rheumatologist sent me to do a lip biopsy because I kept coming back saying something's not right. Here's a couple of lines from the results, which the ENT said was negative:
Rare scattered lymphocytes are present in the stroma; however, no clusters of lymphocytes (including clusters of 50 or more lymphocytes) are present in the specimen.

The dryness persisted throughout the first half of the year and now (I think) is causing my lungs to feel dry. I just have this dry ache in my chest that comes and goes and feel like my breath catches sometimes and makes me cough. I can still take a deep breathe and am not wheezing, but the chest pain is uncomfortable and disconcerting. Now, I say "I think" because I do have two kids and they both caught a stomach bug which turned into minor colds the past two weeks. My husband caught it and has been coughing for the past week. His is in his throat, though. I didn't feel like I caught the cold, but around the same time is when all this chest discomfort started.

Also, I live in Phoenix, AZ, and our humidity is anywhere between 7-13% and it's 103, so the AC is going full blast everywhere you go (buildings, car).

I did see a pulmonologist today. He immediately thought it was related to the bug that went through my house and prescribed Singular and an albuterol inhaler, although he said my breath test was normal. I kept asking if this could somehow be related to dryness, and he said there could be a possibility, but hadn't ever seen that.  :o Does that sound right to you all? I've searched this forum and have found several people with lung issues. I've also researched myself and have seen several studies of Sjogren's patients with lung disease. He did order a chest x-ray, which I'll go get.

I recently had this random week of tingling in my hands, lips and feet, that then turned into achiness. I went to a neurologist, who ran all the autoimmune markers again, which all came back negative again. One thing we did see was that my IGA is just below the lower limit. Could that be related to all the dryness?

So, at this point, I have lots of Sjogren's symptoms (dry eyes, dry mouth, vaginal issues, lung issues), but negative tests and am wondering what to do next.

Do I take the Singular and see if it does anything? Are there any concerns with that? Would Singular help with dry lungs?
Do I follow up with my rheumatologist? Is there anything they can do if you don't test positive?
Since my lip biopsy said there was "rare scattered lymphocytes" does that mean that I am just at the really early stages of the disease? Or does everyone have lymphocytes?
Any thoughts how low IGA could factor into all of this?


I get so scared because I have these two young boys who depend on me so much and feel so helpless as new symptoms keep popping up. I just want to be around to help them grow and enjoy these precious gift and this disease takes so much of your mind share!

Thank you for any recommendations you can provide.

Kiley
37-year-old female, Graves Disease, methimazole, creon, fish oil, flaxseed oil, aloe vera capsules, digestive enzymes, milk thistle, biotin, Vit D, probiotics

Joe S.

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Re: Recommendations on next steps
« Reply #1 on: June 08, 2018, 01:49:54 AM »
While the symptoms feel like a death sentence, they are not. The symptoms can be managed. Worry and anxiety can be a big challenge but Cognitive Behavior Therapy (CBT) can help. I recommend the exercises in David Burns book, "Feeling Good".

My kids learned that I had issues and tried very hard to understand. My daughters boys understand that their mom has AI issues and has to take time outs. She has a different AI disease.

When you feel a flare coming on, Don't Panic, Breath through the pain, and I meditate. For the meditation to work you have to practice when you do not have the pain related to a flare.

You can have a long and full life with this disease and your kids can have a good childhood. Relish and remember the Joys and Good times when they happen. Live in the Present "NOW".
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Navigator

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Re: Recommendations on next steps
« Reply #2 on: June 08, 2018, 07:57:02 AM »
Hi

I would not panic. I agree with Joe.   Last winter there were some really potent respiratory diseases going around. I find that I typically do not get sick but if I do it takes me months and months to get over it .  A couple of years ago I got a respiratory infection in the lungs and it was hard to breathe and took over a year to go away completely.   I am back to normal but for some time thought I would have trouble breathing forever...that that was my new normal.  I was given Obreva which did help get me over the hump.

The tingling in the arm could be autoimmune related.  It appears as a symptom in some autoimmune disorders.  I would encourage you to stay in touch with your rheumy and see where this goes.   For many, if you do develope Sjogrens, it is not a burdensome disease compared to others.  I have had it for 15 years and have worked around it.

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Carolina

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Re: Recommendations on next steps
« Reply #3 on: June 09, 2018, 05:23:59 PM »
I want to add that I have never ever tested positive for autoimmune factors, but I have all of the damage done to my body that happens to those with autoimmune diseases.

The reason I have the damage but not the autoimmune factors is that I have an Immune Disorder in which my Immune System attacks my body with a biochemical (probably cytokines) that is not autoantibodies, as in autoimmune diseases.

I say this because you can have many symptoms, and damage, like that of Sjogren's without having true Sjogren's Syndrome.

You should see an Immunologist, one connected to a major medical center (part of a University) to be tested for other Immune Disorders besides Sjogren's Syndrome.

The good news is that I finally found out what my problem is, Primary Immune Deficiency, with attacks on my organ/s systems.

The bad news is that there isn't anything to do to stop the progress or cure the disorder.

I do have infusions every four weeks of one of the Immune factors that I am deficient in, and that keeps me from getting infections all of the time, as I did before treatment.

If you are really concerned about the progress of your symptoms, you would do well to consult with an Immunologist at a teaching hospital.

Regards, Elaine.

PS  I am 76 and have so many things wrong as a result of the attacks by my Immune System, that I am very disabled.  But I have surely learned a lot, and one thing for sure is that everything that seems like Sjogren's may very well be something else entirely, not simply "sero-negative Sjogren's".
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KindMama

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Re: Recommendations on next steps
« Reply #4 on: June 10, 2018, 07:12:30 AM »
Hello All,

I wanted to thank Joe and Navigator for your encouraging responses and Elaine for your recommendations. It's so encouraging to hear others' experiences and know that life is possible despite all these odd symptoms.

Regarding an Immunologist at a teaching hospital, how would one know where to find a teaching hospital? I live in Phoenix and when I Google Teaching Hospital, Banner University Medical Center comes up and I can search Banner's directory for physician's, but I'm worried those are just normal doctors with affiliations to Banner UMC. If they are affiliated, does that mean they have the expertise in immunology you suggest, Elaine? Just trying to find the right type of doctor.

Thanks so much!
Kiley
37-year-old female, Graves Disease, methimazole, creon, fish oil, flaxseed oil, aloe vera capsules, digestive enzymes, milk thistle, biotin, Vit D, probiotics

markt

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Re: Recommendations on next steps
« Reply #5 on: June 10, 2018, 08:51:08 AM »
Johns Hopkins Sjogrens Center.  They are a research/teaching institution... totally worth the wait.  Be willing to travel.

Carolina

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irish

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Re: Recommendations on next steps
« Reply #7 on: June 10, 2018, 11:16:06 PM »
Teaching hospitals are the ones who have medical students, interns, residents, etc and students in training for all the other medical occupations. Find the name of colleges in your area that offer training for doctors, nurses, etc. You can check the list of doctors on staff of the training hospital and do a search on line. One way or another you will find addresses and phone numbers of these doctors.

You may find info on the hospitals web site as to whether they are training hospital or you could call the hospital and ask the receptionist or ask for someone who would know.

Be aware that many doctors don't get too excited if a person has negative blood work. The problem is a good percentage of Sjogrens and other autoimmune diseases will not show positive blood work. You need a doctor who will treat your symptoms and treat you like you ate autoimmune. A doctor who will every couple of years repeat the blood work to see if it changes. It took me 30 years to show positive blood work.

I also would suggest that you hold off on the lip biopsy for a while as if that comes back negative the doctors may not take you seriously at all. I am of the opinion that you have something going on cause you already have autoimmune disease. That alone should be a read flag for doctors. Hang in there. Rest and don't push yourself or stress yourself out so that you can keep life more manageable.

I would try to get in to an immumologist as they are well versed in autoimmune diseases and know a whole lot about blood tests Good luck. Irish