Autoimmune diagnosing

@bunnysammy your symptoms sound like fibromyalgia as this is one of my problems for me known of the none
, meds helped but the Epsom salts bath or just wring out a washcloth from the E.S.and leave on muscle/s A magnesium supplement also Ice at times Heat other times fibromyalgia is a fickle problem.Best of luck.

Thank you!!

@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.

@sita

I see that John has answered your question. Please keep in touch with us about your results and if you have further questions.

Gail
Volunteer Mentor

I guess I wonder if the person I speak to by phone will have the expertise to know exactly what type of doctor I need to start with. I live in NM, so I want my visit to be productive.

Thanks John. I am so sorry but I posted additional questions to Gail!

Hi @sita, can you ask your doctor to give you a referral? Is it possible to talk with one of your current doctors and discuss it with him? Once you get an appointment at Mayo the doctor can send you to different areas of specialties based on results of their findings. I have no medical training or background but that is my understanding. I recently went to the Mayo Rochester campus to see a Lymphedema specialist and based on some tests he ordered, he's trying to get me to see a knee specialist in Orthopedics. Mayo's doctors work as a team so from your initial appointment they should get you to right area.

I think if you call for an appointment, you will be asked some questions to determine the area/doctor for the appointment. I would write down your symptoms and health issues and assign a priority of importance to each one. Then when you talk to person making your appointment, give her your main issue first and so forth.

Hope this helps.

John

John
These are good ideas. My current doctor is useless. I had wanted to only spend a day at Mayo, since I live in NM. I will research this further. Thanks for your response!

Thank you so much for the suggestions! I've been trying to avoid taking a lot of ibuprofen but I've recently given up on that idea haha. Tiger balm is also a good one for outer pain. I sleep at an incline when I get chest pains. It doesn't stop them but it does help. I saw someone suggesting something call a back pod I think from Amazon that helps with chest pains. I might try that too.

I'm nervous about the diagnosis taking a long time. It's strange... everyday something new hurts. Today I started getting sharp pains around where one of my kidneys are. It's worrying me.

Ah that sounds like a frustrating process. Good luck!
I won't give up, thank you:)