# Checking in. update



## Bethany79 (Jul 24, 2012)

Hi everyone, just thought I would check in and let ya'll know what's been happening. After getting nowhere with a barrage of doctors and tests, I pretty much had given up, figuring everything was all in my head. On Wednesday, I work up with horrible chest pain that radiated into my neck and arm. Went to the er, not a heart attack thank God, but had some labs drawn. Finally something showed up on labs. My sed rate is high! They also said I have an incomplete right bundle branch block witch I need to have monitored with my cardiologist. Back to the sed rate, I was referred to a rheumatologist and saw her this morning. What a great lady, very caring and thorough. She went over all my labs with me, said I hadn't gotten the right tests to rule out lupus. She thinks It might be fibromyalgia or lupus. She gave me a script for lyrical and sent me off for bloodwork. Here are the tests. Comprehensive CBC, Metabolic Panel(14), ANA direct, CCP IgG/IgA ab, Rheumatoid Factor, SLE Profile A, C-reactive Protien, and Sed rate. Loo think we have all bases covered this time around. I am feeling like a human pin cushion. My thyroid is still big and lumpy and I am still having it rechecked in January. On another note, I think my enter was totally wrong about Gerd causing my dysphagia. I have been on nexium over a month now and its getting worse.

I hope everyone is well, and if not, moving towards being well.
Love and Hugs,
Beth


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## Bethany79 (Jul 24, 2012)

And obviously me and predictive text do not get along! LOL!


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## javynliz (Aug 27, 2012)

How do you get Lymes disease? Isn't it from a tick?


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## webster2 (May 19, 2011)

I am sorry you had to get so sick to finally get some help. Hopefully you will feel much better very soon!


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## Bethany79 (Jul 24, 2012)

javynliz said:


> How do you get Lymes disease? Isn't it from a tick?


Yes, I was bitten by a deer tick and was treated for lymes disease. However after treatment I did not get better. Doctors have pretty much beaten the lyme dx to death. I had a false positive followed by 2 negatives.


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## Andros (Aug 26, 2009)

Bethany79 said:


> Hi everyone, just thought I would check in and let ya'll know what's been happening. After getting nowhere with a barrage of doctors and tests, I pretty much had given up, figuring everything was all in my head. On Wednesday, I work up with horrible chest pain that radiated into my neck and arm. Went to the er, not a heart attack thank God, but had some labs drawn. Finally something showed up on labs. My sed rate is high! They also said I have an incomplete right bundle branch block witch I need to have monitored with my cardiologist. Back to the sed rate, I was referred to a rheumatologist and saw her this morning. What a great lady, very caring and thorough. She went over all my labs with me, said I hadn't gotten the right tests to rule out lupus. She thinks It might be fibromyalgia or lupus. She gave me a script for lyrical and sent me off for bloodwork. Here are the tests. Comprehensive CBC, Metabolic Panel(14), ANA direct, CCP IgG/IgA ab, Rheumatoid Factor, SLE Profile A, C-reactive Protien, and Sed rate. Loo think we have all bases covered this time around. I am feeling like a human pin cushion. My thyroid is still big and lumpy and I am still having it rechecked in January. On another note, I think my enter was totally wrong about Gerd causing my dysphagia. I have been on nexium over a month now and its getting worse.
> 
> I hope everyone is well, and if not, moving towards being well.
> Love and Hugs,
> Beth


Beth; you are on the right track now. Thank goodness for this wonderful doctor. I won't be surprised if you do have Lupus and don't worry your little head about it too much. If you do, it can be handled.

I also don't think you have GERD. You are right; I believe.


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## Bethany79 (Jul 24, 2012)

Thank you Andros  a SLE dx at this point would be a huge relief. I know it is manageable and I could finally move on. From your personal expirience, did you get frequent nausea?


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## Andros (Aug 26, 2009)

Bethany79 said:


> Thank you Andros  a SLE dx at this point would be a huge relief. I know it is manageable and I could finally move on. From your personal expirience, did you get frequent nausea?


No, I never had nausea but you may consider gall bladder for that. So so many with thyroid disease also have/had GB. I hope not but it's a thought.


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## sleepylady (Mar 18, 2012)

Bethany,

Glad you are getting somewhere.

My ENT tried to pass off GERD, too. I took the meds for 2 weeks and nothing. I stopped taking them.

I hope you start to get relief soon.


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## CA-Lynn (Apr 29, 2010)

Dysphagia could be caused by any one of a number of things.....among them, arthritis.


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## sleepylady (Mar 18, 2012)

RA causes Dyphasia?

I was tested for antibodies for what I thought was RA and tests did not come back positive. Lately. with the pain I have been wondering if I couldn't have that anyway.


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## CA-Lynn (Apr 29, 2010)

I said that dysphagia can be caused by any one of a number of different things.

You would need to have a very, very, very, very rare form of autoimmune arthritis called cricoarytenoid arthritis. And your symptoms, based on your descriptions, are NOT consistent with it.

Incidentally, and for the record, you don't need a positive RA test to be diagnosed with RA. Again, YOUR symptoms are not compatible to the symptoms that those of us with the disease have.


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## sleepylady (Mar 18, 2012)

CA-

Thanks.

At this point I have a lot of pain-hands, hips, feet, and shoulders. Just trying to explore all angles. You always let us know that everything is not thyroid related and there many other disorders and diseases that can cause these symptoms.

I am just trying to figure out what MY problems are so that I can make myself better.


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## sleepylady (Mar 18, 2012)

Also, are you saying the form of RA, that has dyphasia as a symptom is not consistent with my descriptions, or RA in general is not consistent?


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## CA-Lynn (Apr 29, 2010)

I'm saying that your symptoms don't fall in line with the cricoarytenoid [throat arthritis] type of arthritis.

Now I read that you have been having pain in hands, hips, feet and shoulders.....you might have a form of arthritis, not necessarily an autoimmune type. No pain in the knees?

Dysphagia is not a symptom of arthritis...unless it's the cricoarytenoid.

There are literally over 300 rheumatological diseases.....your rheumatologist should be able to whittle down what applies to you.

Consider that the dysphagia might be thyroid-related.....and that you have something else going on in the world of rheumatology.

If the dysphagia is NOT thyroid-related, look at dermatomyositis or polymyositis. [Though people with either of these diseases are rare....and they typically have some very classical textbook symptoms.]

I'd rule out the thyroid first for the dysphagia; for the joint problems, I would concurrently work with a rheumatologist to rule out the more common arthritic diseases.

Back to the dysphagia: just a sanity check here. Is the dysphagia occurring certain times of the day, is it regular?


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## sleepylady (Mar 18, 2012)

Actually, CA

I don't have a rheumatologist.

First we have to rule IN the thyroid.

I am making an appt soon with another DO and starting over.

I know there is something going on somewhere, be it thyroid or otherwise. I have been to 6 docs(none of them being a rheumy) and been tested for a slew of things. Nothing has been ruled in at all. No tests come out conclusively enough for them. So I am just grasping at straws.

I actually didn't think I had arthritis. But since everyone is telling me to look elsewhere, I am trying to find something that fits the symptoms. Feeling is more burning, and I have pain around my toes, and it actually feels nerve related. I was thinking maybe peripheral neuropathy. Mostly the only lab test that shows lower in the range FT4. I haven't had an FT3 test in a year, so I don't know if that changed. Also my TSI was 63% last count. Since the range is 0-139, they decided it can't be that either. Anti TG is 20 with range of 0-40. Mind you these results are from last October at this point, but I want to go to the right person and stop bouncing back and forth.

I am fresh out of ideas. I thought about a rheumatologist too, but my mom said "Go to a good internist". I'll take whomever can help me to feel better, because now the stress of feeling badly is making things worse.

Andros suggested Hyperthyroid. I hope the new doctor is open minded, because I can't seem to get anyone to look past blood tests. Since nothing is POSITIVE, no one will look any further into it. If not thyroid, fine, but it IS something.


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## sleepylady (Mar 18, 2012)

BTW

I have lump in throat all the time where my nodules are.

Sometimes when I eat, it feels like something is stuck, but more like the nodule is in the way. Again, the ENT told me that doesn't make any sense, because the nodules are so small.

So it makes more sense to blame it on something that doesn't exist, rather than the nodules that they have confirmed DO exist.


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## Bethany79 (Jul 24, 2012)

Wow what the heck is cricoarytenoid arthritis? I don't think I can even pronounce that, LOL. Does that cause a popping sensation or noise when swallowing? I have to get a dray of my neck shoulder and arm, will that show arthritis in the throat?


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## Andros (Aug 26, 2009)

sleepylady said:


> CA-
> 
> Thanks.
> 
> ...


Have you had a bone scan? I hope not but osteoporosis would be something to rule out. And Lupus, of course.

Also inflamation from artificial sweeteners, MSG and other chemicals added to food to enhance flavor and tenderness (many many sodiums.) Glutens cause inflammatory response if one is gluten sensitive or allergic to gluten. The culprit is usually wheat gluten.


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## CA-Lynn (Apr 29, 2010)

Based on your description of symptoms you do NOT have cricoarytenoid arthritis. [If you want info on this, use your search engine and google the term.]

Why waste money on a DO when he won't have the experience or education in rheumatology that a board certified rheumatologist has. If anything, the rheumatologist can rule diseases out a lot faster that any DO.


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## sleepylady (Mar 18, 2012)

I will probably do both.

I need a new internist and this doctor happens to be a DO as opposed to an MD, but I said essentially the same thing to my mom.

Why go to a DO or MD, so they can refer me to someone else? I can go to a rheumatologist without a referral.


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## Bethany79 (Jul 24, 2012)

Lupus was negative! I know its been awhile but we got slammed by hurricane sandy and just when the power came back we got hit with that snow storm. Got a foot of snow and lost power again for 3 days. So my rheumy is treating me for fibromyalgia. I have been told by some people that its a fake condition. I almost fell for that nonsense until I went to see my neurologists for a checkup. He agreed with the rheumatologist and increased my dose of lyrica. I do have to get a mri of my brain and spinal cord in 3 months. So, that is where I stand at this point.


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## sleepylady (Mar 18, 2012)

Glad to hear you are getting treatment, Bethany. Hope you feel better soon.

Some people also think that Fibro is untreated hypothyroidism!


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