My WebMD Sign In

Please enter email address

Enter your password

Keep me signed in on this computer

Show more Information

If you select "Keep me signed in on this computer", you can stay signed in to WebMD.com on this computer for up to 2 weeks or until you sign out. This means that a cookie will stay on your computer even when you exit or close your browser which may reduce your levels of privacy and security. You should never select this option if you're using a publicly accessible computer, or if you're sharing a computer with others. Even if you select this option there are some features of our site that still require you to log in for privacy reasons.

Forget your password? Having trouble signing in?

Why should I
sign up for WebMD?

With a WebMD Account you can:

Track your way to weight loss success
Manage your family's vaccinations
Join the conversation

See more benefits Sign Up

Why WebMD?

My WebMD

Show Menu

Facebook Twitter Pinterest

WebMD Home

Lupus Community

Includes Expert Content

Reply: lupus

Dr. Venuturupalli: Is there anyway I can write to you directly in order to get...

Posted by SaharaStJohn

10 Replies | Reply | Watch This DiscussionReport This| Share this:lupus Dr. Venuturupalli: Is there anyway I can write to you directly in order to get...

Includes Expert Content

Reply: lupus

LisaTru: I don't know if this will help you or not but I also have tinnitus along...

Posted by SaharaStJohn

LisaTru:

I don't know if this will help you or not but I also have tinnitus along with Lupus (SLE), Sjogren's, & Fibro. The only way I can describe the tinnitus I hear is to compare it to a dog whistle that only dogs can hear b/c of their range of hearing. To me, it's a high-pitched searing noise that sounds like someone who would be blowing a dog whistle softly then outright loud for several minutes before it stops.

This worries me b/c I have a retinal disease that was diagnosed long b4 the autoimmune diseases. We have a great ENT in the area & occasionally he will take on interns and the one he had at the time I went in was really nice but he thought I lost my sight to Lupus - he didn't know it was b/c of a retinal disease. He told me more about how Lupus can cause blindness btw the disease and the meds to slow the disease. He said afterward that I just got a double-whammy with the retinal disease then being diagnosed with the autoimmune diseases too.

Dr. Venuturupalli, if you have any insight on the way my tinnitus sounds to me and whether or not it's normal, I would appreciate any feedback. Does tinnitus sound like this for everyone or just me? BTW, we stopped my NSAIDs for 2-3mos, which was tough w/the pain from inflammation and arthritis but I made it through the time yet I still had the tinnitus so it wasn't the NSAIDs; we did the same afterward w/the plaquenil and the same results... I still had tinnitus episodes.

My only fear or rather a deep concern is the fact that I have to rely on my hearing, the feel of my cane, the mannerism of my guide dog when I can take him with me (he's getting way up in age and slowing down a lot but then again, he's not alone & in good company). I fear it will become worse to the point where I won't be able to trust my hearing or be unable to use it as a direction option for me. I use my sense of smell, feeling/touch, and my hearing to get around. I can't imagine doing this without my hearing. It's bad enough I've lost all but a little bit of residual sight (light/dark differences).

Thanks & Lisa, I hope this helps you in some way, even if it's in the knowledge that you are not alone...View Thread

Posted bySaharaStJohn

10 Replies | Reply | Watch This DiscussionReport This| Share this:lupus LisaTru: I don't know if this will help you or not but I also have tinnitus along...

Reply: Pain management recommended injections

Ajpurp: I posted on another of your questions regarding back problems and Lupus....

Posted by SaharaStJohn

Ajpurp:

I posted on another of your questions regarding back problems and Lupus. (Yes, I have Lupus SLE with Sjogren's & Fibromyalgia and I also have degenerative arthritis along w/bulging discs & degenerative disc disease; if that were not enough, I am legally blind b/c of a retinal disease that happens to be genetic but at least it's a recessive gene and it hasn't shown it's ugly face for some 5 generations but still, I have to live with the blindness & hope my two girls never do but even though they come up clear on exam, it doesn't matter b/c they can never be "out of the woods" b/c it can strike at any age...)

If you need a support group, and I hope you are still getting messages from here... if you are on facebook, search for Lupus United and you will find a great group of people who will understand what you are experiencing and they can provide excellent assistance as well as just being there to listen. I don't know where I would be without them. They are my solace, my best lupus friends b/c they understand what I am going through each day.

I am sad to say that my best friend, who is practically like a sister and has been through the whole autoimmune disease diagnoses and treatment regimens and living with the disease - the whole thing with me yet could never understand when I tried to tell her how it was w/these diseases - I'm sad to say that she was diagnosed a few months back and her flares are really bad when they hit though she's in a much lower stage than I am in; hwr, she told me when we had our monthly talk since we live in neighboring states (her DH's job) that now she understands why she couldn't comprehend what I tried explaining. She said I was right; there is no point of reference to make someone understand how these diseases change our lives - often for the worse but sometimes for the best when we have good days. We celebrate the good days & rest & recover on the bad ones. Still, I wish she never had to find out what it was like to live w/these diseases by having them. My heart broke the day she told me the results of the tests though somehow, I knew they were going to be positive b/c I recognized the signs & symptoms & pushed her to get tested. I wouldn't wish this on anyone, not even my worst enemy. --Gentle Hugs and hope to find you on the Lupus United site on Facebook. The support is amazing. We laugh, cry, and even grieve together when we lose another due to their disease. We mourn their death w/love & hopes that there will be a cure before the disease strikes someone else among their families.View Thread

Posted bySaharaStJohn

3 Replies | Reply | Watch This DiscussionReport This| Share this:Pain management recommended injections Ajpurp: I posted on another of your questions regarding back problems and Lupus....

Includes Expert Content

Reply: Spinal stenosis, herniated disc with tear, degener...

Ajpurp: I hate to disagree w/K2 but I also have Lupus (SLE), Sjogren's, &...

Posted by SaharaStJohn

Ajpurp:

I hate to disagree w/K2 but I also have Lupus (SLE), Sjogren's, & Fibromyalgia. I went into a remission, which is likely why I didn't know I had the disease then it was misdiagnosed for a long time too until finally the doc treating an aunt (my surrogate mom) thought of her, then me & it clicked. Autoimmune diseases have been a large part of many of the women in my family along w/a number of men. My Uncle Bobby & Uncle James Earl both have autoimmunes & Uncle James Earl's son has juvenile RA - both he & his father are wheelchair bound - as was Mom b4 she died 8yrs ago from heart failure complicated by autoimmune diseases. (RA). I'm the 2nd of my generation to be diagnosed but the 1st to be diagnosed w/Lupus (SLE) & Sjogren's, that we are aware of anyhow. Scientists believe it's highest among certain ethnic groups which hits me full force as Mother is half Cherokee & half Arapaho Indian & my birth father is Cherokee. It hit me from both sides of the family. Others among my generation are testing positive & more are becoming symptomatic as time passes.

Just so you know, you are not alone in being diagnosed with bulging discs or degenerative arthritis. I have both along w/degenerative disc disease. As a matter of fact, I have to call around to find a neurologist who can handle working with the pain to reduce it b/c if it gets any worse, I will be in a wheelchair before it's over & I was told about 11yrs ago I should have already been in a wheelchair. I've fought it on but now, it's getting too difficult b/c the pain is excruciating. It hurts to walk, to roll over, get up from a laying or sitting position, etc... I can't even sleep w/DH on our bed b/c it's so firm it makes my joints hurt & leaves my back hurting so bad I've close to asking for them to take to the ER for the pain.

FYI: As if that were not enough, I also have a retinal disease from a recessive gene that hasn't shown itself in some 5 generations & even then it's not a guaranteed diagnoses b/c the 5x g-uncle who had coke-bottle-bottom glasses & was practically blind w/no sight remaining other than slivers of light lived to be in his late 90s to early 100s. He actually outlived 2 of his eye doctors & back then there was no name for this retinal disease despite that it's degenerative in nature as well. Plus, once again, no cure available, no surgery can help.

But you are not alone. Please don't think you are alone.

SaharaView Thread

Posted bySaharaStJohn

17 Replies | Reply | Watch This DiscussionReport This| Share this:Spinal stenosis, herniated disc with tear, degenerative disc disease? Ajpurp: I hate to disagree w/K2 but I also have Lupus (SLE), Sjogren's, &...

See Related Pain Management Communities

See All Communities

Women's Health Newsletter

Find out what women really need.

Coping
With Lupus

WebMD's Day2Night will help you develop personal coping strategies for living with lupus – at home,
at work, or with family
and friends.

Other Lupus Information

The opinions expressed in WebMD User-generated content areas like communities, reviews, ratings, or blogs are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of WebMD. User-generated content areas are not reviewed by a WebMD physician or any member of the WebMD editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. WebMD does not endorse any specific product, service, or treatment.

Do not consider WebMD User-generated content as medical advice. Never delay or disregard seeking professional medical advice from your doctor or other qualified healthcare provider because of something you have read on WebMD. You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. WebMD understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.

Lupus Community

See All

Preferences

My Communities

My Discussions

My Email Digests

SaharaStJohn

Latest Activity

See Related Pain Management Communities

Women's Health Newsletter

Coping
With Lupus

Other Lupus Information

Health Solutions From Our Sponsors

More From WebMD:

Find us on:

Lupus Community

See All

Preferences

My Communities

My Discussions

My Email Digests

SaharaStJohn

Latest Activity

See Related Pain Management Communities

Women's Health Newsletter

CopingWith Lupus

Other Lupus Information

More Related Communities

Health Solutions From Our Sponsors

More From WebMD:

Find us on:

Coping
With Lupus