Autoimmune diagnosing

@tina5

I'm so sorry about your negative experience at Mayo with the person in neurology. Please, don't give up. I recommend that you call the neurology department back and ask to speak with a doctor or the nurse. Then, let that person know your health problem, as well as the way you felt treated the first time you called. I know that Mayo encourages open communication and treating people with respect, so they people in charge need to have your information. Thanks so much for sharing your experience.

Gail
Volunteer Mentor

Hi! Hang in there! And start treating yourself for autoimmune in general ways AND learning more and more management tools for individual symptoms - WHILE you continue to look for that rheumatologist who guesses correctly what to test you for. (One day, we will use technology correctly and we won't need for doctors to guess which things to test you for anymore.)
Because it may take a year or more to get to a diagnosis of which autoimmune illness is attacking your joints and body (it may be as simple as RA though) it will be valuable to utilize over the counter things like ibuprofen and gluco- corticosteroid (Flonase/nasacort) sprays for inflammation and pain minimization. You might try 3 ibuprofen as soon as you feel the first twinge of inflammatory pain and then 3 more 3 hours later.
Other management tools I use run the gamut and include things like a daily walk, low/no sugar, no caffeine after 9am, no alcohol, very low/no carbs, sleeping at a significant incline, etc FIND WHAT WORKS FOR YOU.
Remember, even WITH a diagnosis, management tools will REMAIN the primary treatment strategy (there is no cure) so embrace them as a lifestyle and don't let yourself get caught up with the stress of not having a diagnosis.
Best of luck!

Hi, hope I do better at this than yeasterday. John knows, I goofed up. Anyway I have several autoimmune diseases. Yesterday I only mentioned IC. It took several yrs to be formally diagnosed with Mast Cell Activation Syndrome that is affiliated with autoimmune diseases. I tried and tried to get drs to listen and not until one of them had a relative be diagnosed with MCAS was I vindicated and this just happened last week. Thank goodness I have a wonderful pharmacist who is bending over backwards to get me the correct antihistamine compounded that I won’t react to. My allergist is the one with the relative who has had trouble trying to find any meds that I don’t react to negatively. I have to have everything compounded. So, I guess my hope is that don’t give up and learn as much as you can. Also, do things for yourself that will do you no harm, but be proactive with what you can.

Gail
I have had three stomach surgeries, taken PPIs and have symptoms possibly indicating B12, Pernacoius Anemia, etc.
I would like to see a Mayo doctor for a diagnosis, don’t know whether to see a GI doctor, a rheumatologist, an immunologist...can I call Mayo to be directed and to get an appointment?
Can you give me contact information?
I really need a detective type doctor!
Thanks, Sita

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!!

Hi @sita -- You can find the Appointment contact numbers for Mayo here:

-- https://www.mayoclinic.org/appointments

Once you have been seen by one of the Mayo doctors they will refer you to other specialists as needed to diagnose your health issue. They are really good at working together.

John

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. 😉

Dontdass. I will be praying for you. Pray is more helpful than any drug

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/