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.

@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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Hopefully soon I'll get to the bottom of it. I've been doing tons of research on who to see in my area. I don't think there is Mayo Clinic near me. But I've found some promising options.

Yeah, I heard you have to eat gluten for 3 months or something for them to test it but I'm not doing that. I'll be so sick I won't be able to work at all.

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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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That's one of my suspicions. I definitely take a epsom salt bath every night. Tiger balm is a good pain reliever for my muscles too. Have you tried it?

Thank you:)

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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 yes I have ,my son used it when he works out but I found Arnica Gel works I use it and drink Arnica tea for pain Only place I found it is Rite Aide drug store .My Dr.put a referral in for me to see a neurosurgeon for I have a bulging disc that's giving me alot of back pain now.I have a great rheumatologist who has helped me with fibro but old fashion remedies do the best like Apple Cider vinegar in bath water also.

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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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@lioness I hope he can help with that. That sounds painful!

I use arnica too. I didn't know there was a tea. I'm going to try that too.

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@51irishlass

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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You posted correctly, @51irishlass! It's good to get more background relevant to your autoimmune diseases. You may also be interested in taking part in the MCAS discussion group, which can be found at this link on Connect:

– Mast Cell Activation https://connect.mayoclinic.org/discussion/mast-cell-activation/

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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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@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've never heard of that kind of doctor. I'll look into it. I am anemic too.
I am so sorry for your loss. good luck and thank you!

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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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@alphacat I'm so sorry for your loss

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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 worked in Pediatric hospice, please go see a grief counselor. It is catastrophic to lose a child; losing a child when there is the type of scenario you mentioned would be unbearable. I am so sorry for your loss; please take care of yourself. Sita

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@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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Hi @tina5,

I echo @gailb's sentiments: I’m so sorry to hear about your experience with the Neurology department. Please be assured that Mayo Clinic would want you to feel comfortable and confident about your care and your time at Mayo. I’d sincerely encourage you to also call the Office of Patient Experience, and speak to someone about your concerns:

Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

Staff are available to discuss any comments or concerns you may have. Your experience certainly sounds like something Mayo Clinic would want to act upon. Let me know if I can help.

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