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.

@lisabeans

Have your doctor run blood work for autoimmune diseases and see if you can get into a rheumatolgist. Keep logs of your symptoms and keep being an advocate for yourself. You may have to see a few doctors before getting any answers. Good luck and keep us posted.

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Thank you for that information. 

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@lioness

@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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@bunnysammy like I said I can only find it at Rite Aide I have to get more myself but I also drink to ginger-tumeric tea from Trader Joe it's for inflammation so you,ve got both covered Pain @inflammation covered .good luck in n finding them .

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@alphacat

My friend, you need to ask for a referral to a Hematologist (for your platelets and other blood issues), and find a primary Doctor who cares. Seriously. I'm a retired/disabled nurse with multiple autoimmune diseases, and I lost my 21 year old son 2 weeks ago to what can only be described as multiple episodes of neglect or disrespect by the medical community. Sometimes we don't present the same way as a textbook. Well, that's life. People are not books. Nor do we all come with a unique owner's manual. Best of luck to you.

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How do I find discussion on Multiple mialoma

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@alphacat

My friend, you need to ask for a referral to a Hematologist (for your platelets and other blood issues), and find a primary Doctor who cares. Seriously. I'm a retired/disabled nurse with multiple autoimmune diseases, and I lost my 21 year old son 2 weeks ago to what can only be described as multiple episodes of neglect or disrespect by the medical community. Sometimes we don't present the same way as a textbook. Well, that's life. People are not books. Nor do we all come with a unique owner's manual. Best of luck to you.

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Hello @oregongirl,
I found a couple of discussions on Multiple Myeloma that you may be interested in:

Video Q&A about Multiple Myeloma Bone Marrow Transplant
https://connect.mayoclinic.org/webinar/video-qa-about-multiple-myeloma-bone-marrow-transplant/

Groups > Blood Cancers & Disorders > Want to talk about Multiple Myeloma: Anyone else?
https://connect.mayoclinic.org/discussion/multiple-myeloma-299aae/

Groups > Blood Cancers & Disorders > Multiple Myeloma
https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/

I found these discussions by clicking on the Search icon (small magnifying glass) at the top of the Connect screen and typing the phrase multiple myeloma in the search field. Here are the search results:

https://connect.mayoclinic.org/search/?search=multiple+myeloma&facet_type%5B%5D=discussion&hub_data_process=&hub_mvc_submitted_form=true&action=wp_handle_upload

John

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@alphacat

My friend, you need to ask for a referral to a Hematologist (for your platelets and other blood issues), and find a primary Doctor who cares. Seriously. I'm a retired/disabled nurse with multiple autoimmune diseases, and I lost my 21 year old son 2 weeks ago to what can only be described as multiple episodes of neglect or disrespect by the medical community. Sometimes we don't present the same way as a textbook. Well, that's life. People are not books. Nor do we all come with a unique owner's manual. Best of luck to you.

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I hear you and hear the pain. As a clinical social worker, I can tell you that you don’t have to ‘be fit’ for counseling, a good counselor can meet you where you are. Parent grief support groups are helpful as well. Love and hugs to you, I hope you can take care of yourself in whatever way feels right to you. Blessings. Sita

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@dragonl8y

I know you posted the original message four days ago but to me it sounds like rheumatoid arthritis which is an autoimmune disease which dramatically affects joints and can cause fatigue, which is pretty common to autoimmune diseases. I have Systemic Lupus so I know that most autoimmune diseases cause fatigue. And I also know that having one autoimmune disease means you could possibly have another because I have fibromyalgia and one the eats away at my cartilage. So if talk to a rheumatologist and see.

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Hello @dragonl8y, and welcome to Connect. Your insight about autoimmune diseases is so true! We have a few discussions about lupus/systemic lupus that might interest you:

– Systemic lupus erythematosus (SLE): https://connect.mayoclinic.org/discussion/systemic-lupus-erythematosus-sle/
– Tumid Lupus with SLE Symptoms?: https://connect.mayoclinic.org/discussion/tumid-lupus-with-sle-symptoms/
– Have a few autoimmune disorders – now have consistent low grade fever https://connect.mayoclinic.org/discussion/have-a-few-autoimmune-disorders-now-have-consistent-low-grade-fever/

Do let me know if you'd like to hear from fellow members who've shared their experiences about living with various types of lupus; I'd love to connect you with them.

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Dear @alphacat and @dntsass01,

Loss and grief is one common experience we have at one time or another, but losing a child is beyond the natural order of things – I am in awe of the resilience and strength you must have to cope with such unimaginable loss!

I want you to know that you are not alone in your grief. There is a conversation on Connect, "Loss and Grief: How are you doing?" https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/ – whenever you feel ready to join the conversation, you will find that it is a safe place to get support, comfort and encouragement from Connect members who care. Writing out your thoughts, sharing them may let those incredibly painful emotions rest for a bit.

There is a Korean proverb that says, “When a parent dies, they are buried in the ground. When a child dies, they are buried in the parent’s heart."
@alphacat @dntsass01, I wish you peace and beautiful memories, and I hope to read and learn more from your journey towards healing.

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Such a nice and very thoughtful reply. Very heartfelt! Peace to all!

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@kanaazpereira

Dear @alphacat and @dntsass01,

Loss and grief is one common experience we have at one time or another, but losing a child is beyond the natural order of things – I am in awe of the resilience and strength you must have to cope with such unimaginable loss!

I want you to know that you are not alone in your grief. There is a conversation on Connect, "Loss and Grief: How are you doing?" https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/ – whenever you feel ready to join the conversation, you will find that it is a safe place to get support, comfort and encouragement from Connect members who care. Writing out your thoughts, sharing them may let those incredibly painful emotions rest for a bit.

There is a Korean proverb that says, “When a parent dies, they are buried in the ground. When a child dies, they are buried in the parent’s heart."
@alphacat @dntsass01, I wish you peace and beautiful memories, and I hope to read and learn more from your journey towards healing.

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Many thanks and blessings to you. You are so right. In my 25 years as an ER Nurse, the hardest patients were children who died. The parent often would give this gutteral primitive wail that pierced my soul. Even so, nothing could have prepared me for doing CPR on my own child, making him a DNR (Do Not Recussitate) and making the choice to not autopsy so that his 21 year old perfect body could give life to others. We may never know why he developed the brain swelling, but an autopsy wouldn't change anything. For nights, I would wake myself up with my own wailing. I'm past that, but the pain of losing part of my very being, a kid mistreated repeatedly by the medical system who should have not died, will be with me for life, as will the daily tears and pain.

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@kanaazpereira

Dear @alphacat and @dntsass01,

Loss and grief is one common experience we have at one time or another, but losing a child is beyond the natural order of things – I am in awe of the resilience and strength you must have to cope with such unimaginable loss!

I want you to know that you are not alone in your grief. There is a conversation on Connect, "Loss and Grief: How are you doing?" https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/ – whenever you feel ready to join the conversation, you will find that it is a safe place to get support, comfort and encouragement from Connect members who care. Writing out your thoughts, sharing them may let those incredibly painful emotions rest for a bit.

There is a Korean proverb that says, “When a parent dies, they are buried in the ground. When a child dies, they are buried in the parent’s heart."
@alphacat @dntsass01, I wish you peace and beautiful memories, and I hope to read and learn more from your journey towards healing.

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Thank you so much for the kind words and the links. I love the Korean proverb.

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@kanaazpereira

Dear @alphacat and @dntsass01,

Loss and grief is one common experience we have at one time or another, but losing a child is beyond the natural order of things – I am in awe of the resilience and strength you must have to cope with such unimaginable loss!

I want you to know that you are not alone in your grief. There is a conversation on Connect, "Loss and Grief: How are you doing?" https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/ – whenever you feel ready to join the conversation, you will find that it is a safe place to get support, comfort and encouragement from Connect members who care. Writing out your thoughts, sharing them may let those incredibly painful emotions rest for a bit.

There is a Korean proverb that says, “When a parent dies, they are buried in the ground. When a child dies, they are buried in the parent’s heart."
@alphacat @dntsass01, I wish you peace and beautiful memories, and I hope to read and learn more from your journey towards healing.

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@alphabet My heart goes out to you So sorry

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

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This is off topic. Does anyone know if Mayo in Phoenix accepts Medicare for elders?

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@sita

This is off topic. Does anyone know if Mayo in Phoenix accepts Medicare for elders?

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Hi @sita, your question is not off topic at all. I'm guessing a lot of folks are asking the question as it shows up on Mayo Clinics site in some frequently asked questions. Here is some more information that hopefully answers your question. Also there are some contact phone numbers at the bottom of the page where someone should be able to give you more specifics if needed.

Insurance frequently asked questions
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/faq

John

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@sita

This is off topic. Does anyone know if Mayo in Phoenix accepts Medicare for elders?

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@sita all medical services are suppose to except medicare by law.

Liked by dntsass01

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