Educating others on autoimmune diseases

Posted by Kimberly @sebley12, 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 aarda.org 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

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@alysebrunella

Hi @user_chc4f6529, I moved your message to this discussion, so you can meet other people talking about autoimmune diseases.

It can be tough to talk with a family member who is convinced by their opinion. It is best to stick to the facts. Fibromyalgia is not related to sexual orientation or AIDs. It is, however, more common in women than men. And people with other rheumatic diseases, such as rheumatoid arthritis or lupus, may be more likely to develop fibromyalgia. You can read more about fibromyalgia from Mayo Clinic here: http://mayocl.in/29AFgtP.

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Thank you!!

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@alysebrunella

Hi @user_chc4f6529, I moved your message to this discussion, so you can meet other people talking about autoimmune diseases.

It can be tough to talk with a family member who is convinced by their opinion. It is best to stick to the facts. Fibromyalgia is not related to sexual orientation or AIDs. It is, however, more common in women than men. And people with other rheumatic diseases, such as rheumatoid arthritis or lupus, may be more likely to develop fibromyalgia. You can read more about fibromyalgia from Mayo Clinic here: http://mayocl.in/29AFgtP.

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Thanks Alyse. I guess my question is if you died from an autoimmune disease does that mean she died of AIDS? Because the doctors said they didn't know which one she died from? I know you don't die from fibromyalgia because my mom, my sister and I all have it.

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@user_chc4f6529, only the physician attending to your step mother's care can answer your question about the cause of her death. I encourage you to speak with her physician directly, if possible. There are several autoimmune diseases that affect everyone differently, therefore it’s best to speak with a medical professional in this situation.

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@alysebrunella

Hi @user_chc4f6529, I moved your message to this discussion, so you can meet other people talking about autoimmune diseases.

It can be tough to talk with a family member who is convinced by their opinion. It is best to stick to the facts. Fibromyalgia is not related to sexual orientation or AIDs. It is, however, more common in women than men. And people with other rheumatic diseases, such as rheumatoid arthritis or lupus, may be more likely to develop fibromyalgia. You can read more about fibromyalgia from Mayo Clinic here: http://mayocl.in/29AFgtP.

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AIDS and autoimmune diseases are 2 completely different entities. No known relationship. An autoimmune disease is the result of your immune system mistaking 'self', your own tissue, for an infection or invader. AIDS is a syndrome that is the result of an infection which destroys your immune system.

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@alysebrunella

Hi @user_chc4f6529, I moved your message to this discussion, so you can meet other people talking about autoimmune diseases.

It can be tough to talk with a family member who is convinced by their opinion. It is best to stick to the facts. Fibromyalgia is not related to sexual orientation or AIDs. It is, however, more common in women than men. And people with other rheumatic diseases, such as rheumatoid arthritis or lupus, may be more likely to develop fibromyalgia. You can read more about fibromyalgia from Mayo Clinic here: http://mayocl.in/29AFgtP.

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Maybe I confused you. Maybe you were referring to AIDs as in Auto Immune Diseases and not AIDS as in Acquired Immune Deficiency Syndrome. Anyways, similar acronym, totally different problems.

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I have been diagnosed with CIDP at the research hospital UTSW in Dallas. I'm currently taking IVIG treatments, tomorrow will be my 4th of Privagen. Looking for others with this condition that I can connect with and see how their journey is going...

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Welcome to Connect @bburleson1. I'm bringing members @mllucas @ginifuller @captnick @kdp3186 @5134177246 into this conversation. They have written about CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) and IV IgG and may have experiences to share.

You may wish to post a message to this discussion https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/

@bburleson1 - when were you diagnosed? Are you responding well to the IV IgG treatments?

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I was diagnosed in Jul 2015 with GBS and was told by the neurologist I did not need or would benefit from IVIG so I spent almost a year with only pain medication as a treatment. I selected another neurologist at another hospital in June 2016 and rediagnosed with CIDP. Currently I've had 4 IVIG treatments of Privigen. I haven't started noticing improvement as of yet with the infusions. This last infusion went without incident except that my arm started getting very painful and now the pain is from my wrist to my elbow. I called the infusion center this morning and was told they didn't followup on this, to call my doctor. I've been treating it over the weekend with heat packs, but it hasn't relieved it as of yet. I would really like to connect with someone /others that suffer from CIDP and get feedback on their progress.. Thanks

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Hi @bburleson1, I just joined Connect, and saw your post about your post-infusion arm pain. In September I had two infusions of Flebogamma in my left arm and a month later, one in my right. After that one, I had intense pain just as you describe--elbow to wrist. Since I have nerve pain in all my limbs, I figured it was just more of the same, only it lasted longer. It's been eighteen days and the pain is better, but still there. Maybe it was triggered by the IV? Did you find out anything about your post-infusion arm pain? Also, I had severe headaches after each treatment. They lasted about two days.
I was diagnosed with CIDP in September, but my neurologist isn't sure about the diagnosis. My spinal protein levels were only modestly elevated (56), and I have hyperreflexia instead of hyporeflexia. Otherwise, I have nerve pain, muscle twitches, etc. So, I'm going to the Mayo Clinic next month. Hopefully they can figure it out.

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Hello @dlcutler, welcome to Mayo Clinic Connect. I'm sorry to hear you are still experiencing pain so many days after your infusion.

I'm wondering if you would be interested in posting your concern here as well- https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/

Can you tell me if you experienced pain in both arms (elbow to wrist) post infusion? or is the pain just in your right arm?

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