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tcupkaren 05-16-2015 01:37 AM

multiple autoimmune nightmare
 
Hello, I'm a 53yo woman from Long Island NY. I was wondering if anyone has had a similar experience as me. I was diagnosed with Lupus right after my daughter was born 18 years ago. It seemed to go into remission after about 2 years, then I was diagnosed with Graves' disease, and had the RAI treatment, and since then I have been on synthroid for hypothyroidism. I would get occasional flares after that of Lupus over the next several years, gradually getting worse, and finally went to a new rheumatologist and was tested and diagnosed with Rheumatoid Arthritis

.Since then I have been in nearly non-stop pain, especially in my feet, knees, hips, and shoulders. my doctor told me i had moderate to severe ra, and also fibromyalgia. Nothing has helped the pain much, and I am now on disability. I keep getting infections in the sinuses and throat. I don't sleep much. My legs have swollen with fluid since last summer, and I started getting lesions on them, so now i have to wear compression wraps on them.

I've been through Plaquenil, steroids, methotrexate, Enbrel injections, and now I keep trying to stay on Actemra infusions, but i keep getting infections so I have to stop them often. At this point I can barely walk with a walker, I'm short of breath, and in constant pain. I feel like I am slowly dying.

With all the steroids for so long, and with my decreasing ability to move, I have put on over 100 lbs. I eat less and less and cannot lose any weight. I am at my wits end. Does anyone have any advice? should I try another rheumotologist?

MSNik 05-16-2015 04:50 AM

Re: multiple autoimmune nightmare
 
Hi there. Im sorry you are going through so much. I DO think you need to consult another rheumy...not all of them are created alike! Sounds like its even possible that 18 years ago, you may have been mis diagnosed....

Its time to start a full work up, blood and MRIs, etc, to make sure they are sure they know what they are treating you for...lupus can throw many curve balls, but so can RA, Multiple Sclerosis, etc. Make sure they are treating you for the right disorder.

Best to you..

geekymom 08-06-2015 03:03 PM

Re: multiple autoimmune nightmare
 
When you get your workup, make sure your B12 gets tested. Doctors don't always think to include this test but a deficiency can cause all sorts of symptoms, including some that you mentioned.

Do an internet search on B12 deficiency symptoms and see if you have other symptoms that match.

SHERBEAR61 08-24-2015 01:38 PM

Re: multiple autoimmune nightmare
 
[QUOTE=MSNik;5362880]Hi there. Im sorry you are going through so much. I DO think you need to consult another rheumy...not all of them are created alike! Sounds like its even possible that 18 years ago, you may have been mis diagnosed....

Its time to start a full work up, blood and MRIs, etc, to make sure they are sure they know what they are treating you for...lupus can throw many curve balls, but so can RA, Multiple Sclerosis, etc. Make sure they are treating you for the right disorder.

Best to you..[/QUOTE]

SHERBEAR61 08-24-2015 01:41 PM

Re: multiple autoimmune nightmare
 
tCupkaren , I can totally relate to you. I have multiple Apple auto I can totally relate to you. I have multiple auto immune illnesses also. I have Epstein bar, Sjogren's syndrome, fibromyalgia and chronic fatigue syndrome and my doctors have no clue except for putting me on medication how to deal with it. I'm finally seen that is all about nutrition and subtle exercise. I'm not saying that eating well and taking vitamins is secure but I've been trying it for a few weeks and I do have to say I feel better. But when you're in pain it's hard to be motivated to Get up go to the store and buy all the necessary healthy foods. So I'm there with you and I'm struggling with these immune disorders also


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