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Sjögren's Syndrome Message Board
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Old 03-20-2013, 03:52 AM   #1
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BCBSHatesMeLOL HB User
Thumbs down Sjögren's Syndrome - newly diagnosed

Hi everyone!

I'm an almost 29 year old male, diagnosed with SS two days before Thanksgiving. It was actually a blessing and I was/am THANKFUL. Not knowing is the worst feeling.

My doctor abandoned me, right after I was diagnosed (long story) so I saw her 2 times and she put me on Plaquenil which really helped at first. It improved my short term memory problems significantly, helped my cognitive issues (was using big words I didn't even know I knew how to use!) and it helped my morning stiffness, joint pain etc. Then all the sudden, I went downhill and my mom was having to put on my socks and shoes because I could not bend over that far without feeling like I was going to pull my lower back out. I stopped it because I became worse off than before Plaquenil. By the way, my SSA came back at a whopping 7.7 - the range here at LabCorp is 0.0-0.9 so I was beyond sky rocket high.

Long story short, since my doctor was such a you know what, I never got any questions answered, I'm not treating the SS or able to if I wanted to, I know it's more than just dry eyes, mouth, nasal membranes, skin etc but I also don't know everything I need to know for being diagnosed with such a bad disorder.

It would be great if you guys (real life people, not text book taught doctors) could tell me what YOU deal with. What symptoms do you have? Have you landed in the ER with pains and you walk away with no answer, no resolution, no help except the infamous ER "quick fix?"

Do you die from this condition? I've heard no, but how is that possible when eventually your organs shut down from the glands around them drying up, causing organ failure? Does it extend/delay the organ failure if you treat it with meds like Plaquenil vs. doing nothing about it..just living life?

I'm so lost and can't believe my doctor would do this to me and I have nowhere to turn or ask questions etc. She was my Rheumatologist but I would have been leaving her sorry a#$ on my own because she made fun of my Tourette Syndrome and was hysterically laughing. Her excuse/reasoning "I'm sorry I've just never saw anyone in real life with it before." Oh well okay, NOW I understand PERFECTLY...please keep laughing! SMH!

Any advice whatsoever would be great since I have a bad disorder I know hardly anything about.

Thanks and sorry for the new testament post!

Gary

 
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Old 05-05-2013, 12:21 PM   #2
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Cathy211 HB User
Re: Sjögren's Syndrome - newly diagnosed

Quote:
Originally Posted by BCBSHatesMeLOL View Post
Hi everyone!

I'm an almost 29 year old male, diagnosed with SS two days before Thanksgiving. It was actually a blessing and I was/am THANKFUL. Not knowing is the worst feeling.

My doctor abandoned me, right after I was diagnosed (long story) so I saw her 2 times and she put me on Plaquenil which really helped at first. It improved my short term memory problems significantly, helped my cognitive issues (was using big words I didn't even know I knew how to use!) and it helped my morning stiffness, joint pain etc. Then all the sudden, I went downhill and my mom was having to put on my socks and shoes because I could not bend over that far without feeling like I was going to pull my lower back out. I stopped it because I became worse off than before Plaquenil. By the way, my SSA came back at a whopping 7.7 - the range here at LabCorp is 0.0-0.9 so I was beyond sky rocket high.

Long story short, since my doctor was such a you know what, I never got any questions answered, I'm not treating the SS or able to if I wanted to, I know it's more than just dry eyes, mouth, nasal membranes, skin etc but I also don't know everything I need to know for being diagnosed with such a bad disorder.

It would be great if you guys (real life people, not text book taught doctors) could tell me what YOU deal with. What symptoms do you have? Have you landed in the ER with pains and you walk away with no answer, no resolution, no help except the infamous ER "quick fix?"

Do you die from this condition? I've heard no, but how is that possible when eventually your organs shut down from the glands around them drying up, causing organ failure? Does it extend/delay the organ failure if you treat it with meds like Plaquenil vs. doing nothing about it..just living life?

I'm so lost and can't believe my doctor would do this to me and I have nowhere to turn or ask questions etc. She was my Rheumatologist but I would have been leaving her sorry a#$ on my own because she made fun of my Tourette Syndrome and was hysterically laughing. Her excuse/reasoning "I'm sorry I've just never saw anyone in real life with it before." Oh well okay, NOW I understand PERFECTLY...please keep laughing! SMH!

Any advice whatsoever would be great since I have a bad disorder I know hardly anything about.

Thanks and sorry for the new testament post!

Gary

 
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Old 05-15-2013, 06:58 AM   #3
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Join Date: May 2013
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finallyadiagnos HB User
Re: Sjögren's Syndrome - newly diagnosed

Hi Gary - so sorry to hear about your dr "giving up on you". I am also sorry to hear that the plaquenil does not seem to have worked for you. It is often referred to as "the drug of choice" for sjogrens. However, if not well tolerated, there are other medications one can try. You need to see a rheumatologist though not a PCP. If you can get in to see a rheumatologist, he/she can work with you regarding medications to try to get you back to being able to live life.

I was diagnosed in January of this year. Luckily, I have a rheumatologist who has listened to me attentively and has been working with me. Prior to my diagnoses I was barely "living"...I had deteriorated quickly within a year. I had dry eyes like sand was in them constantly, dry nose (chronic sinus infections), heart palpitations, dizzy spells, kidney issues, anemia, GI disturbances, neuropathy, dental issues, etc., etc., etc.

I started Plaquenil in January and have seen some improvement in some of my symptoms. There are other medications that rheumatologists can prescribe to help with many of the symptoms associated with sjogrens.

Find a rheumatologist and make an appointment ASAP.

best of luck to you.

 
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Old 05-25-2013, 12:38 PM   #4
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Join Date: Sep 2008
Location: new mexico, usa
Posts: 119
ruzalily HB User
Re: Sjögren's Syndrome - newly diagnosed

Hi Gary,
I'm coming on board late here so I don't know if you are still checking these posts. I have just been diagnosed with Sjogren's, and I have been experiencing every single symptom that you have, and a few more, but I have not experienced the dry eyes/mouth which I find strange, because they seem to be the hallmark signs of Sjogren's. My mom has it, (as well as RA, Raynauds, and Hashimoto's Thyroiditis), and she only has the dry eyes and mouth. I had no idea until I researched it, that Sjogren's could wreak such havoc on bones, muscles, nerves, etc. I also didn't know that it had any impact on cognition. That is a great relief for me to hear that someone else has experienced that (although I'm sorry you have) because I have been having issues with memory and putting words together lately and it's been freaking me out.

As for your trip to the ER, I have definitely heard the "there is nothing that can be diagnosed" from many doctors for many years, until just a month ago. In my case though, there is still a possibility that I have MS, so I'm going to a neurologist this Tuesday to hopefully eliminate that possibility. Although I have a positive ANA and SSA, my titer was low enough that my rheumatologist said that if she gave me a blood test in three months, my ANA/SSA could possibly be negative, then positive a few months later, etc. Mine was not nearly as high as yours, but my symptoms are sometimes pretty awful. I'm 47, 5'4" and 97 lbs, so maybe my size has something to do with why i'm feeling such pain despite having the low titer. Who knows.

I'm so sorry your doctor treated you so badly, she should be ashamed to have made such a statement to you about Tourette's. It would be bad enough for a lay person to say something so ignorant and insensitive, but for a medical "professional" to do so??? Inexcusable. You are better off without her, and she should be reported. Hopefully you've moved on and found a caring rheumatologist to take care of your issues.

From the research I've done on Sjogren's, I am learning that the symptoms you've mentioned, and the one's that I have had as well, can all be attributed to Sjogren's. I am also having burning, intense pain in certain fingers, my thumb joints, and one of my knees. I also have a constantly aching lower back, and daily pain in my right shoulder blade area. Numbness and tingling in my fingers and toes, almost daily, some days worse than others.

I'm new to all this, too, so I can't tell you what to expect, but I did want to assure you that you aren't alone in this weirdness. I hope you're feeling better, and maybe have found another med instead of the Plaquenil. I am interested in trying it, to see if maybe it will work for me. I'll see what the neurologist says on Tuesday, first.

Best wishes Gary! Lily

 
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Old 05-27-2013, 07:46 PM   #5
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ryan pausina HB User
Smile Re: Sjögren's Syndrome - newly diagnosed

Hi, sorry to hear about your problem, seems like you are really unwell. I recently broke my back and had my last operation 10weeks ago. Its been hard for me as i have not been able to get done all the cool things that kept me going in the past. Perhaps if you listen carefully to your body you can control the symptoms and onset? sometimes its not so much diet, exercise, stress but more lifestyle that makes a large help..?? Its no good though when an ailment tells you how to live your life but perhaps something to think about.. Hope this is some help to you.

The other thing i can recommend is a new non-medicine catalytic innovation that I have just finally developed and manucafactured last week. i have made 200 units in very limited supply. It cleans the mouth environment and is designed to aid a suppressed oral immune and salivary system. I cannot say how much it will cure your your problem but i anticipate it will likely have a significant impact on your wellbeing. I would be very thrilled if it could help you out. As you would be my first sjogrens customer, i could give you one or two for free but you would need to pay for delivery from NZ. I dont know the rules of this blog site so i wont leave my details, please contact me or friend me to get in touch.

Ryan

 
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autoimmune, plaquenil, sjögren's syndrome, ssa



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