Author Topic: does this sound like Sjogren's? Pls help, so confused!!  (Read 535 times)

Livia

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does this sound like Sjogren's? Pls help, so confused!!
« on: May 17, 2017, 02:46:17 PM »
Hi everyone,

I'm new to this forum. I hope its ok for me to post this & get some answers from anyone here as I am so confused & lost! I hope you guys can help me figure if what I'm going through sounds like Sjogren's or something else? I'm a 27 year old female.


Last summer of 2016, I had some blood-work that looked like this:

positive anti-SSA IgG (3.6 H) and anti-SSB (3.75H)....the normal limit was <1.0.
positive Anti -DNAds level of 47.73H ; the normal limit is 0-1.0.
Gamma globulin 2.29, Protein 8.8H, Globulin 4.3H.... all these were above normal.

Before this, I had been suffering from dry mouth & dry eyes as confirmed by my optometrist who also told me I have a mild corneal inflammation that looked like it'd get worse with time. I'd also been suffering from Hypoglycemia even fasting/non-fasting. At that time my GP told me she suspected Sjogren's but didn't tell me that it was Lupus she was worried about because of my anxiety issues. But back then I didn't have any symptoms & was told I didn't need to see a rheumy if I didn't have symptoms.

Then several months later I started to get these symptoms: joint pain, diarrhea, loss of appetite, headaches, fatigue, etc. I also noticed I developed something looks like mild Malar rash. I had some friends & also my mom tell me they noticed it. Got worse in the sun, etc.

So my GP ordered more bloodwork:
ANA 1:320 POSITIVE
AST/ALT levels abnormal

2 months after that I finally saw the rheumy and everything came back NEGATIVE. Except liver panel was abnormal and she diagnosed me with Hypothyroidism but thinks its too early to give me medication for it.


Now its 2017, and I'm having these weird symptoms despite 2 months ago in early March my ANA came back NEGATIVE again. First, I'm always cold or my feet and hands are freezing even when my body is warm. I noticed this esp in my fingers & toes. A few times I saw my toes slightly pale in colour. When my hands/feet get like this I also get this feeling where I think they're about to go numb.  I've been getting a burning throat & this weird taste in my mouth. I've also been getting this burning or air sensation in my upper chest area. Sometimes it'd be hard for me to swallow or swallowing just feels "heavy". I've also been suffering from bad breath, no matter what I do & my dentist told me its cuz of my dry mouth. Lately I feel like my acid reflux has gotten worse with more nausea after eating. Then there's my eyes which is another issue. I've been having MORE burning, itching, watery eyes that just feel "tired" and became more sensitive to light. In the morning sometimes it's hard for me to open my eyes, my lids are so heavy! A month ago I started having neck and upper back pain & tension. It gets better with rest and anti-inflammatory meds. I don't know if its a sleeping position, my handbag or something else. And there's this vaginal burning sensation that I've been getting on and off for the past 2 weeks. what's bothering me the most is this episode where I got sharp chest pain while inhaling. this happened to me twice in the past week and lasted about 10-15 min each time. lastly I'm getting this mild pain under my left jaw area (salivary gland area) that I feel mostly sometimes with swallowing and sometimes if I probe it.


Does this sound like Sjogren's or something else like early Fibro? I'm really confused guys and don't have insurance. Going to my GP again or rheumy means I am paying out of pocket which is hard for me right now. What do u guys think, I mean you guys who have Sjogren's, do these symptoms sound familiar to you??


Thanks guys!!

« Last Edit: May 17, 2017, 02:48:48 PM by Livia »

trejonina

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Re: does this sound like Sjogren's? Pls help, so confused!!
« Reply #1 on: May 17, 2017, 09:36:23 PM »
I read on this forum that sometimes tests show positive then negative. And even if your tests come back negative the symptoms point to SJ.Same with thyroid tests. If your TSH is 2.5 OR even 2 , if you have the symptoms the  good drs wil prescribe medication. Have your thyroid checked too, I suggest. Luck Nina

trejonina

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Re: does this sound like Sjogren's? Pls help, so confused!!
« Reply #2 on: May 17, 2017, 09:39:59 PM »
Oops, if you have a malar rash, then... do you have lupus, or it could be lupus and SJ ???

emma6

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Re: does this sound like Sjogren's? Pls help, so confused!!
« Reply #3 on: May 18, 2017, 04:45:04 AM »
this probably won't be very helpful since i am also new to this

i'm 26F was just surprised at how many symptoms we have so many in common, hypoglycaemia, joint pain, dryness, fatigue, rash, cold hands & feet, trouble swallowing and more.

i'm in the same situation as you its obvious something autoimmune going on but no one can say for sure what it is.

no tests are perfect for everyone but i would take a positive as a positive even if it has now become negative. especially if you have symptoms that match what you tested positive for.

kind of sounds like your rheumy is disregarded all your symptoms based on your now negative blood results. to me it doesn't sound like Hypothyroidism alone can explain all those problems.

after seeing so many useless GPs i have found a really good immunologist who has just starting treating me for sjogrens based on symptoms and not just test results.

wishing you all the best

SjoDry

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Re: does this sound like Sjogren's? Pls help, so confused!!
« Reply #4 on: May 19, 2017, 11:33:22 AM »
Hi emma6,

I think that there are many of us that will tell you that your symptoms are similar to ours, and that can mean Sjogren's. We would also tell you that somewhere in the neighborhood of 30-40% of people with Sjogren's do not test positive for it. This is called Seronegative. It is absolutely possible to have flaming Sjogren's with a negative blood test. It could be lupus or lupus & SS as someone suggested. It is not uncommon to have more than one autoimmune disease. And the symptoms overlap a lot..in SS & Lupus.

The gold standard treatment is Plaquenil for SS, and I think many Lupus patients take Plaquenil as well. The important thing is if you are having very significant and bothersome symptoms, to find a physician who is willing to treat you regardless of what your bloodwork says. It is not necessary to wait for years for a possible positive blood result. The priority should be helping you to feel better.

There is a helpful handout from the Sjogren's Syndrome Foundation that you should be able to download which explains how to massage your salivary glands. I was told by a dentist at the NIH to do this every day. That might help some of your discomfort in that area.

One of the leading Sjogren's docs in the country at Johns Hopkins said that they were finding that when they did a skin biopsy on Fibro patients, that they actually have Sjogren's.

Hope you are able to get a doc who will help your symptoms.

Take Care.
SjoDry
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http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Livia

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Re: does this sound like Sjogren's? Pls help, so confused!!
« Reply #5 on: May 24, 2017, 12:49:41 PM »
I read on this forum that sometimes tests show positive then negative. And even if your tests come back negative the symptoms point to SJ.Same with thyroid tests. If your TSH is 2.5 OR even 2 , if you have the symptoms the  good drs wil prescribe medication. Have your thyroid checked too, I suggest. Luck Nina

this probably won't be very helpful since i am also new to this

i'm 26F was just surprised at how many symptoms we have so many in common, hypoglycaemia, joint pain, dryness, fatigue, rash, cold hands & feet, trouble swallowing and more.

i'm in the same situation as you its obvious something autoimmune going on but no one can say for sure what it is.

no tests are perfect for everyone but i would take a positive as a positive even if it has now become negative. especially if you have symptoms that match what you tested positive for.

kind of sounds like your rheumy is disregarded all your symptoms based on your now negative blood results. to me it doesn't sound like Hypothyroidism alone can explain all those problems.

after seeing so many useless GPs i have found a really good immunologist who has just starting treating me for sjogrens based on symptoms and not just test results.

wishing you all the best


Hi emma6,

I think that there are many of us that will tell you that your symptoms are similar to ours, and that can mean Sjogren's. We would also tell you that somewhere in the neighborhood of 30-40% of people with Sjogren's do not test positive for it. This is called Seronegative. It is absolutely possible to have flaming Sjogren's with a negative blood test. It could be lupus or lupus & SS as someone suggested. It is not uncommon to have more than one autoimmune disease. And the symptoms overlap a lot..in SS & Lupus.

The gold standard treatment is Plaquenil for SS, and I think many Lupus patients take Plaquenil as well. The important thing is if you are having very significant and bothersome symptoms, to find a physician who is willing to treat you regardless of what your bloodwork says. It is not necessary to wait for years for a possible positive blood result. The priority should be helping you to feel better.

There is a helpful handout from the Sjogren's Syndrome Foundation that you should be able to download which explains how to massage your salivary glands. I was told by a dentist at the NIH to do this every day. That might help some of your discomfort in that area.

One of the leading Sjogren's docs in the country at Johns Hopkins said that they were finding that when they did a skin biopsy on Fibro patients, that they actually have Sjogren's.

Hope you are able to get a doc who will help your symptoms.

Take Care.
SjoDry


thanks you guys so much for replying back & for your support! these symptoms are driving me crazy and drs are brushing it off and telling me things like anxiety, stress, muscle strains, etc, etc.

the thing is i've been dealing with a lot of joint pain in the last 2 months. first it was one of my joint fingers- red, stiff and painful to move. then it went to my symmetric finger, but same joint. after that it's been both shoulders, pain, stiffness. then both elbows also painful and warm to the touch. then one wrist followed by the other wrist. then there was my ankle and wow did that pain burn! it was also warm and VERY stiff esp in the morning. next it was my lower back pain came out of nowhere! then there's my other issue of burning achy muscles. i get these almost everywhere but esp around my joints. it's a strange pain that ive never gotten before, its like a burning ache that goes deep into the muscle. i'm also getting the burning feet and hands esp my heels and around my knuckles. sometimes it'll creep up into my forearm.

lately ive been overcome with bouts of bad fatigue esp in the mid/late afternoon. my whole body is achy and tense. i don't believe i've ever ran a fever, however i feel like i have one. i feel my face warm and my body feels like it has the flu. i'm so tense and stiff and SUPER achy all over in the morning. the last update in my symptoms has been the burning pain in my lower legs in the morning. my legs feel sore & stiff including my toes. it's not until the afternoon when the stiffness and pain eases and get some flexibility.

i mean come on, can we believe ALL this is due to stress & anxiety?? who in their right minds believes this? it only gives me more stress and extreme anxiety living like this and excessivey worrying about what is happening to me.






Pepita933

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Re: does this sound like Sjogren's? Pls help, so confused!!
« Reply #6 on: May 25, 2017, 02:43:49 PM »
Although most of have taken Plaquinel for Sjogren's my Rhumatologist indicates it does not work.  Plaquinel is given for Lupus.  Because Sjogrens and Lupus share similarities they thought it would help.  Plaquinel is off script?  Meaning it has never been approved for use with Sjogrens, and we all know how long we have been taking Plaquinel, it should have been supported if it works.
Sjogren's Syndrome, fibromyalgia, achalasia, osteo arthritis, degenerative disc disease, hypo thyroid,(no thyroid),

eye2dry

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Re: does this sound like Sjogren's? Pls help, so confused!!
« Reply #7 on: May 25, 2017, 03:28:16 PM »
hello to all.


I was diagnosed in 2010 with sjogrens, Ra and hypothyroid, positive labs.

I was rx'd Plaquenil in the beginning and have taken it ever since. Have had no side effects from it.

I also took methotrexate for several years with the Plaquenil. I eventually stopped the methotrexate
d/t numerous skin cancers to face/neck/sideburn areas.....some required Mohs surgery and I was also
hospitalized 1 year ago for GI bleeding. To help with my joint discomfort I also take Cymbalta.

Yes, folks with Lupus take Plaquenil. Plaquenil has been used to treat malaria for years.
Plaquenil has been very important for me, it works to help with my joint discomfort and fatigue.
Seven years ago I was panting/out of breath just walking down the hallway, seven years ago I dragged
my right leg around....hip was painful. I also slept 16-18 hours at a stretch....nearly every day.

I am not cured....not in remission.......but I live a fairly good life with ups and downs...

Are you saying that studies have shown that Plaquenil does not help with sjogrens ?????? at all  ????

shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

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