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bunnysammy (@bunnysammy)

Autoimmune diagnosing

Autoimmune Diseases | Last Active: Sep 2, 2018 | Replies (97)

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@dntsass01

I feel bad that no one has been able to help you. I know I would definitely be looking for a new doctor. Anyway, I have multiple autoimmune diseases and your symptoms sound like it could be anyone of them. I have Crohns, Celiac, Autoimmune Hepatitis, and Fibromyalgia. It is often hard to tell which one is causing the problem. I've had some awesome Dr's at Mayo and I know they will get to the bottom of this. I'm sure you know that they can't test you for Celiac if you have already eliminated the gluten. Take Care and hang in there!!

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Replies to "I feel bad that no one has been able to help you. I know I would..."

Hi @dntsass01 — I see that you are fairly new to Connect. I would just like to welcome you to Connect and thank you for posting. It sounds like you have a lot going on yourself. Have you made any lifestyle changes to help with your different autoimmune diseases?

Thanks again for sharing ~ John

Yes, I am fairly new. I have had to make a lot of lifestyle changes. Of course the obvious one is cutting out the gluten, which is not as easy as one might think. It makes it very hard to go out to eat at a restaurant or any where for that matter. And of course no alcohol because of the autoimmune hepatitis. I have been doing a lot of journaling and have started some meditation and find that they both help a lot with the pain and depression. Also trying to learn my limits and knowing when I have to take a rest throughout the day. Today I am not doing much as we had a town reunion this past weekend and I am wiped out! Trying to figure out which thing is really acting up is a challenge because they all have every symptom known to man. 😉

Knowing my limits is a big thing for me also. I found a great site with a lot of helpful information on how to understand how your brain works and use that to help you feel better. There are a lot of short videos that are well worth watching. I had the opportunity to listen to Dr. Amit Sood and loved his message of hope, healing, and happiness. I've even watched several of his videos a few times because they just make me feel good:

http://www.resilientoption.com/

@dntsass01 l am so glad you joined us. This is a great group and sometimes l get answered if some of my question l has no answers to. I have autoimmune encephalitis , hepatic encephalopathy and you are right you do have good and bad days. Sometimes l an ok and can do my regular run around and then somedays l have friends and family members who take me around. I get dizzy sometimes and fall. And just recently l had slurred speech, unable to walk and tremors. I went to the hospital and they thought l was having a stroke because my pressure also went up to 250. Then after they ran the test they said everything was normal but on my insurance l was diagnosed with abnormal ekg. Figure that out. Today l was going to go food shopping but l don't feel good got in the car thinking l wea okay. I am now back in the house. And with meds that a problem also. I just fell about three weeks ago and l had a cast and they thought they would have to do surgery but l was praying no Lord l can have anymore surgeries so l am now in a boot. I was only allergic to codeine and now it so many they hate to prescribe medication to me. I have a EpiPen. And I'll went to the mayo clinic or was all worth. I had so many diagnoses now it's down to2 besides eyes, blood pressure you know things you normally here about. The hematologist out there told me you will have spells like that sometimes. Well l not excepting that but right now it is what it is. So l would read up everything you can, educate yourself because sometimes you will have to say hold up doctor that's not what l know. Also look on the mayo clinic website on autoimmune encephalitis or autoimmune hepatitis. To get yourself familiar with your and your symptoms because l was having psychiatric symptoms and that one of the symptoms and some doctors aren't aware of the symptoms and people were placed in the mental house. Which l have been in the mental hospital 3 times because they didn't know the symptoms. So get as many answers to questions. And if you not pleased with your doctors get another. I have fired so many my general practice doctor keep up with the changes. After years of memory loss and then bringing tired of living that way, crying and praying l have my memory back after 17yrs. The doctors were amazed an thought l was lying. When l went to the mayo clinic and 4hr cognitive test and PET test everything normal. Praise God!!! Then today l was listening to Joseph Prince and he was sharing about what doctors are saying about the brain he said they are still learning. And everything he was saying l went through. And when l was going to college to get s 70 on a test l was over the moon. This year l took a test for entrance for college. I got a 90. So with God all things are possible. And when l told my doctor he looked at shocked. So l will be praying for and move forward and don't give up.

Hopefully soon I'll get to the bottom of it. I've been doing tons of research on who to see in my area. I don't think there is Mayo Clinic near me. But I've found some promising options.

Yeah, I heard you have to eat gluten for 3 months or something for them to test it but I'm not doing that. I'll be so sick I won't be able to work at all.

Have you been tested for Lyme? You will need to find a Lyme Literate MD…

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