hsmom2011 Posted July 24, 2012 Share Posted July 24, 2012 How did you get your diagnosis, and how long did it take? It took a few years just to find a Dr. who would listen. I need an answer yesterday. I'm concerned that whatever is going on is going untreated, plus it would help to have something to tell people when I can't do so many things. I really have no explanation and pretty much keep it to myself. This summer has been horrible with the heat, I feel so guilty that I am unable to take the kids swimming, etc... I had a year when I felt wonderful - back to my old self, it was great, and then everything crept back up on me and I just hate this so much. The only test that has shown anything so far is the ANA, but it was a low positive and all else was normal - arrgh! I wish the Dr. could just climb inside my body for 24hrs, that's the only way they will ever really understand. :confused: Quote Link to comment Share on other sites More sharing options...
mommy5 Posted July 24, 2012 Share Posted July 24, 2012 Yes ... I've been recently diagnosed with something that is so scary. I'll pm you. Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted July 24, 2012 Share Posted July 24, 2012 I do... I have hashimoto's, pcos, fibromyalgia and they cause all kinds of crazy. Basically dr. Just throws a synthroid at me....and I do take Metformin for the IR related to pcos. Auto immune sucks! Basically, I keep my diet very clean....and exercise especially when I don't want to or think I can't. I will never give in! Ever! Quote Link to comment Share on other sites More sharing options...
hsmom2011 Posted July 24, 2012 Author Share Posted July 24, 2012 Thank you both for your replies. Exercise just makes me so sick, I really wish I could do more. I have such horrible fatigue, and I get weakness on one side with too much activity. When I try to exercise or even clean house, I get flu-like symptoms and weakness, it's horrible. My dr has given me steroids which do help for a while, but it all eventually comes back. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted July 24, 2012 Share Posted July 24, 2012 I would go to a naturopathic doctor. Many insurance companies will cover them. A naturopathic doctor will look for the cause rather than just treating the symptoms. I have had wonderful results from being treated for various vitamin and mineral deficiencies (vitamin D and magnesium being the most dramatic) and being treated for parasites. Your causes may vary greatly from mine but I would still encourage you to go to a naturopath. Quote Link to comment Share on other sites More sharing options...
eight_gregorys Posted July 24, 2012 Share Posted July 24, 2012 So sorry to hear about what you're going through. Autoimmune diseases can be difficult to diagnose. My journey began with Hashimotos. That was 8 years ago and at this point my thyroid doesn't function...I rely on synthroid. Two years after that, I was diagnosed with Systemic Lupus and Fibromyalgia. It didn't take long to get this diagnosis as I had pretty serious renal involvement.....labs alone were enough to diagnose the SLE. About one year ago, I was diagnosed with rheumatoid arthritis, too. My rheumy says that autoimmune diseases like to come in pairs...and in my case triples. I wouldn't worry yet about being untreated. To be honest...depending on the disease, treatment often treats symptoms and not necessarily the disease itself....and sometimes it isn't "bad enough"...my doctors words...not mine... to be treated. I went for 1 1/2 years where I didn't need any steroids or immunosuppressants at all. Sadly, things didn't stay that way. I guess what I mean to say is....it will show up in a little....just be persistent in seeking care. I saw a few doctors before my SLE diagnosis....and was told it was "all in my head"...until one day I finally found a doctor that pretty much diagnosed on the spot and confirmed with labs. I know it's frustrating...don't give up though. You know your body best. What does your doctor suspect disease wise at this point? Quote Link to comment Share on other sites More sharing options...
Pamela H in Texas Posted July 24, 2012 Share Posted July 24, 2012 Any chance you're in/near SW Virginia? I'm not perfect by ANY stretch, but that doctor there gave me my life back. When I got to him, I couldn't walk, look side to side or up, stand long enough to shower or fix supper, drive, etc. All that changed within ONE visit (though it took longer than that to stick). Anyway, I am one with multiple dxes, knowing that the chances that there isn't an umbrella dx that they'd all fall under is slim. My endo agrees with me. My rheumy feels for me. My neuro made a stupid joke about "practicing medicine." In the end, I just have to live day to day. Thankfully, I *can* now. If I fell into some money, I'd be taking a month trip back to Big Stone Gap, VA to see if Dr. Dalton could help me further (We were only in the area a short time so I got 4 sessions with him before we came back to Texas). Anyway, sorry for your issues. A LOT of people wait *years* for a diagnosis (and/or the dxes change). It stinks. Royally. And fortunately for you, you're in good company if that helps at all. BTW, please remember that NO parent can do all they want with their children. It just isn't possible. I wish I could accept that fact a little better myself. Quote Link to comment Share on other sites More sharing options...
kolamum Posted July 24, 2012 Share Posted July 24, 2012 I don't know if you read the book Paleo Solution by Robb Wolf, but it talks about how some of that can help an autoimmune disease. Quote Link to comment Share on other sites More sharing options...
AKamp Posted July 24, 2012 Share Posted July 24, 2012 My DH has Ulcerative Colitis. He has been going through a really bad flare-up since Feb. I have done a lot of research on this in hopes to understand it better. I do my best to be supportive. Somedays are hard, I can't even imagine being in his shoes. He still works everyday and supports us, I don't know how he does it. He was diagnosed fairly quickly, went into remission for 5 yrs, and now it's back with a vengeance. I hope you have support and people to talk to with the similar issue. :grouphug: Quote Link to comment Share on other sites More sharing options...
Parrothead Posted July 24, 2012 Share Posted July 24, 2012 I have a couple. Once I got a referral to a specialist it was pretty easy to get a diagnosis. Quote Link to comment Share on other sites More sharing options...
hsmom2011 Posted July 24, 2012 Author Share Posted July 24, 2012 So sorry to hear about what you're going through. Autoimmune diseases can be difficult to diagnose. My journey began with Hashimotos. That was 8 years ago and at this point my thyroid doesn't function...I rely on synthroid. Two years after that, I was diagnosed with Systemic Lupus and Fibromyalgia. It didn't take long to get this diagnosis as I had pretty serious renal involvement.....labs alone were enough to diagnose the SLE. About one year ago, I was diagnosed with rheumatoid arthritis, too. My rheumy says that autoimmune diseases like to come in pairs...and in my case triples. I wouldn't worry yet about being untreated. To be honest...depending on the disease, treatment often treats symptoms and not necessarily the disease itself....and sometimes it isn't "bad enough"...my doctors words...not mine... to be treated. I went for 1 1/2 years where I didn't need any steroids or immunosuppressants at all. Sadly, things didn't stay that way. I guess what I mean to say is....it will show up in a little....just be persistent in seeking care. I saw a few doctors before my SLE diagnosis....and was told it was "all in my head"...until one day I finally found a doctor that pretty much diagnosed on the spot and confirmed with labs. I know it's frustrating...don't give up though. You know your body best. What does your doctor suspect disease wise at this point? I had one doc that wouldn't even talk to me until I agreed to see a counselor. Well, I refused and moved on. Thanks for the advice. I will hang in there. Quote Link to comment Share on other sites More sharing options...
hsmom2011 Posted July 24, 2012 Author Share Posted July 24, 2012 Wow! You have all given me some great advice. I will do my research today. Thank you! :001_smile: Quote Link to comment Share on other sites More sharing options...
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