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"How many people have autoimmune diseases or even know what they are?

Posted by @sebley12 in Autoimmune Diseases, Aug 17, 2011

I am a patient with MS, Lupus, Sarcoidosis, Psoriasis, Erethema Nodosum, Scleritis, Blferitis, optic Neuritis, Gastroparesis and many more.
There are over 100 autoimmune related diseases that so many people are unaware of and need ro educate themselves as well as their Doctor's so that no one will have to wait 35 yrs for a true diagnosis like I did.
Autoimmune diseases are the number one killer especially to women and children.
Please visit to learn more about autoimmune and how it can be related to your chronic illness. I promise you wont be sorry that you did. I am just an advocate for everyone here who is looking for answers and seeking help.
Thank you for listening. xoxo

Tags: Autoimmune diseases, pulmonary fibrosis

fgetty, jackieg, John Bishop, Mentor and 9 others like this

Posted by @roysbaby, Aug 22, 2011

I was tanning for wedding in may this year got itchy rash and diagnosed with lupus

Kimberly likes this

Posted by @sebley12, Aug 26, 2011

The sun has a tendency to bring out the autoimmune culprits as did mine when I was a very young girl at 13 yrs old. I had sunburn real bad all over and it brought out the Psoriasis rash and itch..and the when I was 19, I couldnt walk because I went to the beach with my school friends and got burnt again..they thought I had polio or rumatic fever. Please visit to see all of the autoimune diseases. I hope this helps and keep me posted, ok? Hope all turns out well. Did u get an ANA blood test yet? This is the test you need for an active autoimmune system. xoxo

KimPF likes this

Posted by @roysbaby, Aug 26, 2011

Yes twice I have lupus sle and lichen planeaus Im taking plaqenol. now I have bronchitis. I just wanting to prevent myself from getting more

aimeenc likes this

Posted by @sebley12, Aug 26, 2011

I am so glad you are taking care of yourself, and doing better. Have they said what the strokes were from? How many autoimmune diseases do you have? I hope not a lot. xo


Posted by @sismom1, Dec 11, 2012

Why does autoimmune disorders seem to come in multiples. Is this the norm?


Posted by @8times, Aug 25, 2011

My wife has it. It was found about 5 years ago in her eyes. She has since had 2 ritcert implants and cataract surgery but is now suffering from 8 strokes. Uvitis in her eyes and possibly vasculitis caused strokes. Please say a prayer for her and I'll do the same for you.


Posted by @sebley12, Aug 26, 2011

Funny ..I had strokes too, TIA's and I have MS. MS also mimics strokes and they over look optic neuritis a lot. I hope she is seeing a Neuropthamologist as they can see behind the retina and give a better diagnosis. I am so sorry to hear this about your wife, please keep me posted as to how she is doing and if I can be of help to you both. Take care of you's! xoxoxo

ms.parking and Kimberly like this

Posted by @breni, Sep 29, 2011

Hi, I was diagnosed with several different autoimmune diseases about 6 years ago. I started out with PAD and after a Bi=femoral bilatteral aortic by-pass I was diagnosed with Lupus, fibromyalgia (the list goes on and on) I have been on Plaguenil for five years as well as other medications. Nothing changes and pain remains a constant. I like your suggestion to visit I will do that.

Kimberly likes this

Posted by @sebley12, Oct 4, 2011

I am so happy Breni that you are going to as you will find so much information there. They have a book that they sell, I call it the Patients Bible because Doctors know nothing about it and it is full of information on all of the Autoimmune diseases as well as tests to have done for answers to these diseases. The book is called "THE AUTOIMMUNE CONNECTION" you can order the book from I love this book and I sell a lot of them for the association. Its empowerment to the patient and also information that the Docs don't know about as well. Do yourself a kind favor and get the book, you will NOT be sorry. Best of health to you my friend and please spread the word about Autoimmune Diseases. xoxoxo Talk soon.

KimPF likes this

Posted by @sismom1, Dec 11, 2012

How do I get this book?


Posted by @birdsong, Oct 29, 2011

Have you had your sub-catogories of IgG tested and alpha-1 tested?

hayleesmom2005 likes this

Posted by @sebley12, Nov 14, 2011

Thank you Peace keeper as i always give Jesus the upper hand in everything I do. I always say, if you want to make God laugh..make a plan! Because it is so true, he has it all planned out for us anyways. I am happy that he came into your life & touched you the way he did, I never doubt him and I continue to let him control my life as well. Good for you and may he continue to bless you with his love & peace.


Posted by @bsr713, Dec 8, 2011

Oral lichen planus is getting worse and it is very painful to eat. Has anybody else overcome this?

KimPF likes this

Posted by @kimpf, Jan 18, 2012

Not without a boost of prednisone.


Posted by @ckellis, Dec 20, 2011

I have auto immune hymolitic anemia with both warm and cold antibodies. Usually life threatening for most people because of not knowing where to go. Thanks! What else can we do?

Posted by @bernard422040bellsouthnet, Jul 17, 2012

My husband has cold hemolytic anemia. He's been treated with folic acid, B-12, Prednisone, and Rituxin (Chemo) -also had Neuprogen shots for low white counts. Nothing has worked for him. He also has Lupus and recently conrtacted Hepatitis A and lilver failure. If anyone knows of any research or treatments, please let us know. Thanks!


Posted by @klisa24, Dec 23, 2011

I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed with Autoimmune Hepatitis. Has anyone delt with AH, it is frightening and mine has gone into Cirrhosis.

RamonaB and KimPF like this

Posted by @kimpf, Jan 18, 2012

I've had Lupus/MCTD for 18 years. I have recently been diagnosed with Pulmonary Fibrosis, pretty much a death sentence, unless I can get a lung transplant. I can understand your fear. Have 'they' talked to you about a liver transplant?


Posted by @klisa24, Jan 18, 2012

They have, for now I am on Prednisone and Azathioprine which has greatly helped. It appears that my body was entirely inflamed. My Mom had MS and it apears that there is a genetic link for AH. Are you on a lung transplant list?


Posted by @kimpf, Jan 18, 2012

I'm not on a transplant list. My breathing isn't that bad yet, but I guess it progresses fairly quickly. Has the medication effected your original diagnosis?


Posted by @klisa24, Jan 18, 2012

No I actually have a ton of auto immune disorders, AH is the lastest. I am hoping that it will not progress and so far it seems to be. If it does go further in the future, then I will be a liver transplant patient. What are they doing for you? are you on meds??


Posted by @kimpf, Jan 19, 2012

For all the autoimmune disorders, I have tried Plaquanel and Methotrexate, but neither seemed to be doing any good. I only take 5 mgs of prednisone. I just began using oxygen when I do any cardio.


Posted by @sebley12, Jan 19, 2012

I too have tried those meds and nothing seemed to work for me, however when I do receive the steroid infusions, I seem to get more relief and my Psoriasis also clear up as though I have never had them. My optic Neuritis clears up as well. I just wish the steroids of any kind did not come with any side effects because I find that it is a temporary cure. Hope you feel better KimPf. xoxo


Posted by @sebley12, Jan 19, 2012

You may have been active with your Lupus and didnt know it , but the heat of the tanning bed brought out the symptoms. Feel better. xo


Posted by @ramonab, Oct 26, 2012

I was diagnosed last December with AH. I'm off the prednisone, now taking the azathioprine...per the biopsy, they caught it before my liver was damaged. I'm frightened, period. Appreciate anything anyone would be willing to share.


Posted by @cathie, Jan 6, 2012

I have had Psoriasis for several years, and was diagnosed with pustular 6 years ago. Now my doctor suspects I may have MS. Does anyone know if the Psoriasis causes MS? My symptom is numbness inside and out of left side of face as well as the chin.


Posted by @klisa24, Jan 18, 2012

Psoriasis is an auto immune disorder as is MS but Psoriasis would not cause MS.


Posted by @kimpf, Jan 18, 2012

I was diagnosed with Lupus 18 years ago and 'upgraded' to MCTD several years ago. I have also had 2 minor strokes. In November I was diagnosed with Pulmonary Fibrosis, Yuk! I have my first appointment with Mayo in Phoenix in March. Eventually, I guess a lung transplant will be considered.....


Posted by @camille, Apr 19, 2012

Hi Kim,
I'm sorry you are suffering with Pulmonary Fibrosis.
I just got diagnosed with MCTD, and in the past was misdiagnosed with asthma. (Was taking immunotherapy and subsequently had pulmonary complications and took Prednisone.)
I had a mini stroke at work I think. Please tell me more about your experiences with this illness, and how your appt. at Mayo went.

Camille likes this

Posted by @terigracehotmailcom, May 26, 2012

I also have MCTD and an interstitial lung disease called BOOP which has caused pulmonary fibrosis. I have Sjogrens Syndrome also. I have been on prednisone nonstop for 8 years now along with numerous other meds. My bones are beginning to fracture thanks to all the steroids not to mention the weight gain and mood swings. Anybody else on steroids indefinitely?


Posted by @sismom1, Dec 11, 2012

I have been diagnosed with mctd and fibromyalgia. Diagnosed 6 yrs but I think it started 15 yrs ago (based on everything I read). I have never heard of strokes being a problem. My rhuemy is not been very forthcoming with info on my mctd and would appreciate any info of strokes because of mctd. I try and read eveverything I can but any info would be helpful.


Posted by @katiandtylersmom, Mar 29, 2012

I have Hasimoto's thyroiditis. Its autoimmune. Just wondering if anyon ehere has or knows about the problems with this disease?


Posted by @kyjeanne, Thu, Jun 9 at 11:00pm CDT

I have Hashimoto's thyroiditis too, along with Sjogren's Syndrome, Fibromyalgia, and other diseases. I'm on L-Thyroxin for Hashimoto's, so it has been staying at good levels. I have gained weight and know if not treated, that happens, but I wonder if it happens anyway? Also, fatigue goes along with that and my other auto immune diseases, and I believe hair loss may be a factor, which I also have. I'll be interested to see what others have to say.


Posted by @flowerbeauty, Sat, Jun 11 at 12:24am CDT

I have Sjogren's Syndrome, and overwhelming tiredness seems to come along with that at times.  I hope you feel better.  Dry eyes is a major problem for me because of Sjogren's.                                                                Janet


Posted by @ambrose, Sat, Jun 11 at 7:34am CDT

I've had Hashimoto's for 30 years. The best treatment ever received was Diflucan. It's an antifungal. But apparently you can't stay on Diflucan forever. I take 60 mg of Armour Thyroid it takes the brain fog away helps me keep my weight tolerable. My doctor has suggested that I follow a nondairy gluten-free diet. I think I do lose weight when I follow it - but its - slow so very slow. I've also learned to take a good digestive enzyme supplement. I feel fine about 75% of the time. I do believe all the autoimmune disorders are connected to antibiotic use. The antibiotic use is connected to gut health or the lack there of. I believe that there's a whole new science emerging that will address these autoimmune disorders through gut health - and the balance of flora and fauna and enzymes. Until then we're really on her own with the help of good doctors. In today's fast schedule of work and life I find it almost impossible to avoid gluten or dairy - in some tiny form. If all I had to do was carefully prepare my meals each day it's attainable. Since my doctor won't prescribe Diflucan on a regular basis (and I have yet to understand why but I do trust him) - I take my own antifungal's like olive leaf extract. It helps but it's a BB's worth of ammunition compared to the cannonball Diflucan.

Edited: 09/02/2016 @ 8:27am


Posted by @kelseydm, Sat, Jun 11 at 8:03am CDT

Hi @ambrose. Welcome to Connect! Thanks for sharing your story and insights with our community. It sounds like you have certainly done your research which is so important as we seek to be our own health advocates. And, i'm glad to hear you have a doctor you trust! You said you feel fine about 75% of the time... what are some of the symptoms you experience the other 25%?

Also, I just wanted to let you know I removed your phone number from your post for your protection and privacy. We encourage people not to share that kind of personal information and instead connect by private message if they want to chat offline.


Posted by @kelseydm, Sat, Jun 11 at 8:40am CDT

Hi @flowerbeauty. Welcome to Connect! Thanks for joining and sharing your insights with our community. We are happy to have you here. You mentioned fatigue and dry eyes as the major symptoms you experience. Any tips for coping with both of those?

I'd like to introduce you to @kyjeanne, @jillnc, @blindeyepug, @pw2bwell, @johnwburns and @dawson54 who all have Sjogren's Syndrome. You may consider starting a new thread in the Autoimmune Diseases group where you all can share experiences and support each other. I'd be happy to help you do that if you'd like.

kyjeanne likes this

Posted by @st64, Sep 1, 2012

I have had sarcoidosis since 1999. I have been in remission but every morning I have a very phlegmie cough. It lasts a few hours. Would that be from sarcoid possibly? It's very irritating.


Posted by @isurvivealone, Nov 2, 2012

Mayo has a pots clinic I believ


Posted by @fisheadhotdog, Dec 5, 2012

i have 30+ auto immune related disorders. I waited many years for a diagnosis, but now one knows how to treat me. I have been living on steroids and narcotics, Mayo is taking my narcotics away. Non narcotic pain meds and immunosuppressent meds have not helped me in the past. I am worried about losing my functionality. Anyone use methadone maintenance?


Posted by @rabbit10, Sun, Jun 5 at 8:40pm CDT

Sebley12 thanks for your post . I also have several autoimmune diseases. Lichen sclerosis, otosclerosis, restless legs, peripheral neuropathy, blefaritis, and now just diagnosed with gout. Unbelievable because I don't eat any of the things that bring it on. I didn't drink enough water though but I sure am now. Once you get a autoimmune disease it seems your exposed to others.

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