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Diagnosed with an Auto Immune Disease

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Old 06-30-2011, 12:58 PM   #1
Join Date: Jun 2011
Location: England
Posts: 1
mimi56 HB User
Question Diagnosed with an Auto Immune Disease

I was diagnosed with an Auto Immune disease 2 years ago.
I am still with the consultant, but am very confused. I get Urticaria all over my torso and head. When these are up my joints come under attack and I can barely move. I have put on quite a bit of weight which is unbearable.
Every time I see the Consultant she tells me it takes time to find what causes this problem. I had a bad virus three weeks before this started and she thinks this is what triggered my Auto Immune Disease.
If I get ill with a minor cold or infection my Auto Immune system attacks me with inflammation on all of my joints and Urticaria on my head, torso, and bottom of my feet. I cannot barely move when it is like this.
When I am not seeing the consultant my GP looks after me she is great.
but when she has her vacation the trouble begins. I get pushed from pillar to post. Can anyone help me I feel sometimes that I am going mad. Even my family say well they should have treated it by now and you should be better, And I am not trying, I still carry on at a slower pace and some days are worse then others, but I will not give in.

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Old 06-30-2011, 01:48 PM   #2
Join Date: Jan 2010
Location: Whitehall, PA U.S.
Posts: 97
awlright HB Userawlright HB Userawlright HB Userawlright HB Userawlright HB Userawlright HB User
Wink Re: Diagnosed with an Auto Immune Disease

My Dear Mimi56 I am deeply sorry that you are having such a difficult time. I too suffer from an autoimmune disorder and after seeing 3 neurologists do not know what I have. From doing a bit of research on my own and benefiting from the commentary on this site, I've learned that these disorders are very difficult to diagnose and treat. Certainly some present clear as water and fortunately respond to treatment. Then there are those that fall between the cracks and depending on the neurologists you see a particular condition is pinned to it, however treatment is something else. Since no specific conditon can be clinically established, you'll get something for the pain and other symptoms but nothing to treat the cause itself because no matter what you may have been told, the neurologist doesn't know what you have;and she/he is not going to take a risk on treating a conditions for which there is no real, solid, clinical evidence. Of course, somewhere down the line they'll finally tell you this.

Nevertheless, you must do everything to help yourself and looking carefully at your diet is essential. Feeling anxious and helpless can lead us to eat more of the wrong foods. Since you're unable to exercise cut back on the calories; go for the vegies, (yes, I know easier said than done). By all means get a second opinion and a third if possible. In short, keep on struggling, asking questions, gathering all the information you can on your symptoms, but do not act on anything that anyone tells you without first talking to your primary doctor, who you very evidently trust.

You're in a fight my friend that may prove to be long and hard, but you've come to the right place. Here people care and will, i'm sure, provide you with lots or really helpful information. Hang in there Mimi and trust that my heart goes out to you because I'm in the same boat. All the best, Awlright

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