Author Topic: Symptoms  (Read 669 times)

ConfusedPotato

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Symptoms
« on: January 09, 2018, 05:18:57 AM »
Hi, new joiner here. It seems in the past month, I went through so
many forums and doctors ... It is beyond frustrating.

I am male, 25, and started to suffer from dry mouth, relatively dry eyes
and fatigue, joint aches. Just around two weeks ago.

Before this, I had heart palpitations and fatigue with normal heart,
have the following thyroid tests from June 2017:

FT4 21.1 (12.00-22.00)
FT3 6.67 (4.00 - 6.80)
TSH 1.67 (0.4 - 3.8)

Then in start of December 2017:

FT4 22.1 (12.00-22.00) HIGH
TSH 1.67 (0.4 - 3.8)

Then in end of December 2017:

FT4 21.6 (12.00-22.00)
FT3 3.60 (4.00 - 6.80) LOW
TSH 2.05 (0.4 - 3.8)

Around end of December with those results, I started to feel cold, exhausted and
now can just walk without feeling my heart at all.

I now do not have palpitations anymore, just feel cold and exhausted, dry skin,
mouth, eyes, constipation. I went to endo, got some tests, no results yet.

Went to rheumy, did saliva, tears test. I made 4 ml of saliva in 5 minutes and
"more than enough" tears. I honestly feel very dreadful day to day and it seems
like my xylitol mints are not helping me to produce saliva anymore.

I do not eat much food, but try to eat AIP way. I found that some food makes my joints
hot, but mostly knees. They do not swell but hurt a little but and exude heat.

In addition, I had TMJ pains since September, along with vertigo. They disappeared for 3 months
and now are back.

My saliva is: not enough, sticky, and sometimes with weird taste. A bit sweet maybe.

How can I help myself to quell the symptoms?

finallyadx

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Re: Symptoms
« Reply #1 on: January 09, 2018, 10:13:56 AM »
Hello confusedpotato - welcome to the forum. Sorry to had to find us, but glad you did.  I joined the forum about 4, maybe 5 years ago when I started to have strange symptoms.

I had been to two drs who basically wrote me off after running blood tests and having no answers.  I finally found a dr who was willing to run extensive tests and determined I had sjogrens.  I now am followed by a rheumatologist.

I see that you list tests you have had run recently but I did not see mention of an autoimmune panel or an SSB/SSA test which may help determine if you have sjogrens.  There is also a newer test that was developed I believe in the last year that can help determine if you haver sjogrens more quickly.  It used to be that folks could go years with symptoms and maladies before being finally diagnosed with sjogrens.  It took me years of sinus infections, ear issues, heart palpitations, extreme fatigue, dry eyes, nose and mouth and weight loss before I finally received a diagnosis (hence my name on the forum) and now my treatment (for symptoms anyway).

If you have not had autoimmune testing, you may want to ask for some additional testing.  A rheumatologist is the best place to start as well - they have extensive knowledge in blood tests that primary care drs and others may not be fully aware of or well versed in.

I am certain other members of the forum will chime in with more information and some sound advice.

In the meantime, you could try over the counter products such as biotene for dry mouth, refresh for dry eyes.  As far as fatigue goes, I only found relief (and it is not a miracle) with plaquenil which is prescribed as sometimes a first attempt at treating symptoms of sjogrens as well as lupus. 

It sounds like you eat a clean diet or the ai protocol, which is great.

Sending positive thoughts your way and hoping you find some relief and some answers.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

Joe S.

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Re: Symptoms
« Reply #2 on: January 09, 2018, 02:39:03 PM »
Welcome to the forum. Typically it takes 7 years to get a diagnosis. I was diagnosed on symptoms after about  12 years. I was first diagnosed with Fibromyalgia after my first 7 year period. A move and another 7 years I was DX'd with Fibro again. A few years went by and then I had a moth on my face. 12 years later a Sjogren's DX.

I wrote this to tell you not to give up. Management of the symptoms is the best way to enjoy life. You can see what some of us are taking by looking at our signatures. Often the DX is complicated with other diseases so always check for Reasons, drug interactions, counter indications, and side effects. It does not hurt to talk with your health care professionals of various disciplines.
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ConfusedPotato

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Re: Symptoms
« Reply #3 on: January 15, 2018, 05:14:15 AM »
All tests were negative, for RA or SS.

Next step is to do ultrasound of salivary glands.

Carolina

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Re: Symptoms
« Reply #4 on: January 15, 2018, 03:39:11 PM »
Tests help us sort out the things we know from the things we don't know. 

In this case you may sort in a diagnosis of Sjogren's, or you mays sort in a diagnosis of something we can't even imagine and I don't want to speculate on...  Remember we've sorted out anything pointing us at nothing (because this falls in the class of things we don't know).

When the results point to nothing, that only means we don't KNOW what it is.  Many of us are stuck in this limbo for a very long time.

I think, however, with your age of 25, there will be a very concerted effort to run all possible tests.

So what you can do now is:   make what's dry, moist, with an oral medication:  Pilocarpine or Evoxac.   Have a humidifier running to help, as well.  Eye drops and eye sprays are helpful.

For fatigue there is not much without further diagnoses.   I'm sure your doctors want to test you without beginning to treat symptoms with more medications, particularly with medications that might infer with the tests.

Please be so kind as to keep us posted.

Regards,  Elaine
« Last Edit: January 17, 2018, 08:01:52 AM by Carolina »
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ConfusedPotato

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Re: Symptoms
« Reply #5 on: January 17, 2018, 12:52:58 AM »
Salivary glands look normal on ultrasound. Waiting for next steps from rheumy.

ConfusedPotato

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Re: Symptoms
« Reply #6 on: February 10, 2018, 07:22:23 AM »
Can a person have Sjogren's despite negative blood tests, negative salivary gland scans etc.?

Thing is, I just talked with my father about things, he recently had teeth issues, and I asked if he
has dry mouth and he said he also has dry eyes.

Now, for myself, I do not think my eyes are dry. I do notice that saliva is present nowadays during the
day but there are times it is not the case. I also went to see a perio and dentists. I do have more cavities
than usual but no periodontitis so far. Dental hygienist noted that on a couple of teeth my gums seem somewhat
receded but she told it is due to bad brushing. She taught me different method.

I have not contacted my rheumy yet because of being away from UK but am thinking to ask about her opinion.

Is there anyone here who tests negative for everything and still have issues? I am also looking for possible diabetes,
but two endos so far claim it is not the case. However, I experience weird blood sugars and dry mouth can be caused by
this as well.

I tend to wake up in the morning with dry mouth, it is not horrible, but noticeable when I started paying attention. Bad breath
as well.

Joe S.

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Re: Symptoms
« Reply #7 on: February 10, 2018, 09:31:01 AM »
There are others like me that have been diagnosed on symptoms only. I started out with a moth on my face and my mind went to lupus. My rheumy ran lots of tests. She sent me to a neuro. I asked why I was there and he told me because of my Sjogren's. That Rheumy neglected to tell me. I got a specialist Rheumy from the local medical college. He wanted to run the tests again (4th time). I said, "I have dry eyes, nose, mouth, skin, and A$$. What do you think it is?" With out hesitation he said, "S.I.C.C.A./ Sjogren's". I just needed to hear a DX.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism