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Autoimmune issues

Dec 30, 2014 4:07 PM

Good afternoon,

Wanted to find out if there were others on here with autoimmune issues that have not been clinically diagnosed? I am currently being tested and monitored for lupus. I have Raynaud's, Sjogrens, peripheral neuropathy.

Dec 31, 2014 6:58 AM

I have problems with my immune system causing me to be ill all the time but they don't know what it is

Dec 31, 2014 7:44 AM

I have immune issues that aren't diagnosed yet. I have a cold now, and it takes me 2-3x as long to get over things compared to the rest of my family. I'm guessing because of asthma. But they've diagnosed Sjogrens and the doc mentioned Raynaud's & possible MS, Lupus or another neurological problem. They're starting the tests next month.

Jan 01, 2015 5:19 PM

I have diagnosed Hashimoto's and psoriasis, but suspect something else is amiss. I have a broad spectrum of symptoms that flare up when I get ill or stressed which only semi-fit with all of my diagnoses. Annoying... Many think I'm a hypochondriac, even though I have multitudes of evidence that each time I say something is wrong, there is something actually wrong, and it can be measured.

Jan 01, 2015 6:31 PM

Hi I've got many illnesses My main 3 are Arthiritis, Fibro, and Vasculitis

Feb 05, 2015 12:05 AM

I haven't been officially diagnosed. I have lupus, but for insurance reasons we have to wait for me to be officially diagnosed. But I also have psoriasis. I am so glad to have a place where I can talk to other people who understand my pain. Do any of you deal with kidney pain from your lupus? My is unbearable most of the time. Just wondering how normal that is.

Feb 05, 2015 11:39 AM

I haven't been diagnosed with anything yet but im in a lot of pain all the time. They dont know what it is and so far all the tests are negative for anything. They think I have an autoimmune disease but they aren't sure. I have severe joint pain all over. Deep pain in arms face and neck, twitching, fatigue, low immune system, numbness and tingling in arms and legs

Feb 05, 2015 3:41 PM

I have arthritis symptoms but blood tests are negative for RA and other auto immune things my ESR level is borderline

Feb 06, 2015 12:17 AM

KimBerenee82
Sounds familar. I am having a brain MRI on the 26th to hopefully rule out multiple sclerosis which is an auto immune disease. I was dx with fibromyalgia years ago but now they think I may have some type of Auto immune issues. Let us know what you find out.

Feb 11, 2015 11:57 AM

Recently diagnosed with lupus, I'm so tired:(
My shoulders are so painful to touch all across the top of my back and neck:(
And last night my heart was going crazy pounding so hard it scared me:(

Feb 14, 2015 8:57 AM

I have raynauds, multiple sclerosis, psoriasis, Epstein Barr virus, chronic fatigue and asthma. My drs have me taking so many medications I feel like a walking drug store most days.
I hurt all the time, but hide the pain from my kids (21, 20, 18, &15). I still work and my boss & co-workers can tell when I'm hurting. They try to do anything they can like give me extra breaks or a chair to sit on instead of standing all the time.
Right now I've been stressed a lot since my 18yr old has been showing a lot of signs of ms, I just haven't told him that - that's up to the drs since I pay them the big bucks...
My family has many auto-immune diseases like ms, lupus, ra, Epstein Barr, etc. We've all had our demons to fights with each of the diseases and have come out fighting on top as the winners. You just need to find what's going to help you become that winner and not stop. 😀

Feb 14, 2015 11:45 AM

Srock, that's a great attitude, it's good to hear and inspiring. I really hope your son does not have MS. I worry that one of my kids has some of the diseases I have and really hope I am completely wrong as I would not want to him to suffer not even 1% of what I go thru.
Tee82, you should tell your dr about your heart if you haven't yet. Have you tried anything for you shoulders, neck, back? I suffer from chronic pain there as well. I try ice, heat, Voltaren gel, massage therapy, stretching and Tens Unit for relief. Hope something helps you!
And all above, I understand some of your feelings. I feel like I have some autoimmune thing going on and have been diagnosed with several diseases (psoriatic arthritis, lupus,) but ends up I don't have them. I do have fibromyalgia and ????? Four rheumatologist later LOL. I do believe there are autoimmune diseases that are 'serology negative' as I have heard one of the Drs say. It means the blood tests that diagnose inflammation and therefore autoimmune diseases test negative. It takes a thorough, observant clinician that is willing to go to the 'gray' area and/or think outside the box to figure out or at least try to figure out what is going on with someone that has so many symptoms going on. What the last rheumatologist said to me made me feel better and was the most understanding and truthful. He said he believed I have something inflammatory/autoimmune going on besides fibro but was not sure yet what it was. Said to keep a real specific journal entry f symptoms and keep going to dr regularly and that one day, I would have some condition/symptom that would be a "ahah! moment" and help in a true diagnosis. I do believe I have come close to it. Will know in a couple of weeks and share with all. Good luck to all of us and may today be a low pain day for all!

Feb 15, 2015 8:15 PM

I hope & pray neither my children or grandchildren ever suffer what I'm going through. I know it must really look awful when my inabilities make my 84 yo dad try to get up and help me. Bless him!

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