Autoimmune diagnosing

Posted by bunnysammy @bunnysammy, Jun 30, 2018

Hi, I'm just a bit frustrated and wanted to talk to some people going through the same things. I thought I had Celiac disease but because I really don't like going to the doctors I avoided getting a for sure diagnosis and went gluten free. It's definitely helped with a lot of my symptoms. I got a blood test a few months ago for my doctor. My platelet count was extremely low as well as my iron and b12. She told me it looked like something autoimmune but I didn't know what that meant and she didn't press me to see other doctors about it. She also mentioned something seemed strange with my bone marrow. I didn't think anything of it. I thought the vitamins she suggested were all I needed. Well in the past couple months I've been in more pain than usual. Sharp chest pains, stiff and painful joints and I ache everyday. I've also had a persistent low grade fever. I get sharp pains in my hands too. I feel super weak and fatigued daily which I've always had bouts of but for awhile being gluten free helped. I can't keep up with my boyfriend when we go on walks anymore. My pain keeps me up at night. I have a few other symptoms but these are the most frustrating ones. Does anyone have any idea what this could be? I set up a doctors appointment but it'll be another month till they can see me.

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.

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@gailb

@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

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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

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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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@gailb

@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

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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

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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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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

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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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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. 😉

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

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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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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/

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@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.

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@oregongirl

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

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Thank you!!

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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!!

Jump to this post

@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.

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@gailb

@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

Jump to this post

@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

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