1. < Autoimmune Diseases

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

dragonl8y | @dragonl8y | Jul 5, 2018

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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1 reply
alphacat | @alphacat | Jul 5, 2018
In reply to @alphacat "My friend, you need to ask for a referral to a Hematologist (for your platelets and..." + (show)
@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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Hematologists are Specialists in blood disorders, including all components of the blood.

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alphacat | @alphacat | Jul 5, 2018
In reply to @alphacat "My friend, you need to ask for a referral to a Hematologist (for your platelets and..." + (show)
@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'm still too raw and emotional to be fit for counceling. I think it is something you deal with the rest of your life, it just gets less acute.

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dntsass01 | @dntsass01 | Jul 5, 2018

@alphacat. Just a quick reply about the loss of your son. I am so very sorry. We lost our oldest child and only son 17 years ago to cancer when he was 19. I want to say that it does get easier with time. Not better, but easier. Life will be good again. Hugs to you.

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alphacat | @alphacat | Jul 5, 2018

Thanks. I'm so sorry you lost your son to cancer. Another chapter left out of the parenting books...losing a child.

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tina5 | @tina5 | Jul 5, 2018
In reply to @lisabeans "Have your doctor run blood work for autoimmune diseases and see if you can get into..." + (show)
@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 | @lioness | Jul 5, 2018
In reply to @lioness "@bunnysammy your symptoms sound like fibromyalgia as this is one of my problems for me known..." + (show)
@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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Texas Freedom | @oregongirl | Jul 6, 2018
In reply to @alphacat "My friend, you need to ask for a referral to a Hematologist (for your platelets and..." + (show)
@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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Mentor
John, Volunteer Mentor | @johnbishop | Jul 6, 2018
In reply to @alphacat "My friend, you need to ask for a referral to a Hematologist (for your platelets and..." + (show)
@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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sita | @sita | Jul 6, 2018
In reply to @alphacat "My friend, you need to ask for a referral to a Hematologist (for your platelets and..." + (show)
@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.

Jump to this post

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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