Share this:
bunnysammy
@bunnysammy

Posts: 31
Joined: Jun 30, 2018

Autoimmune diagnosing

Posted by @bunnysammy, Sat, Jun 30 7:05pm

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.

REPLY

Hello @bunnysammy – Welcome to Mayo Connect. I’m happy you found us. Connect is a good place to share your health concerns, ask questions and read what other Connect members with similar health issues are doing for treatments. I’m sorry you haven’t been able to get any solid answers. I’m sure that can get you feeling like giving up. Don’t do it! Posting on Connect is a good start and hopefully someone can provide information that will help. Here is a story that may help you know you are not alone:

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I'm also tagging a few members who have had difficulty getting a diagnosis. @lillone43, @heidisue, @kibwezi, @techi, @sacolucci can you offer any suggestions for @bunnysammy ?

One thing I can think of is to make a list of all your symptoms and questions and maybe a daily pain log rating your pain. Then take that with you to your doctors appointment and see if you can get some answers. It's so easy to forget to ask or tell the doctor your main questions during the appointment and the list can become your talking points.

John

I feel for you Bunny I too was six months before my Doctor took much notice of my condition….I had lost twenty pounds looked like heck and my husband was taking me every week to see him…..he still insisted that there was nothing wrong with me…..I think I have to explain that he thought in the first place that it was my heart and I went through all the tests for that ….at that time blood was drawn and didn't show anything wrong….so the Doctor would tell me that there was nothing wrong with me……I got so week that he took more blood ….phoned me that evening to tell me I hadn't been imanaging this and there was something wrong……I collapsed completely three days after and had to be taken into hospital…..
That was ten years ago and I have been attending OHSU ever since….so have faith I think you will be looked after once someone takes you seriously….keep talking to the Mayo Clinic it helps…..Beryl

@johnbishop

Hello @bunnysammy – Welcome to Mayo Connect. I’m happy you found us. Connect is a good place to share your health concerns, ask questions and read what other Connect members with similar health issues are doing for treatments. I’m sorry you haven’t been able to get any solid answers. I’m sure that can get you feeling like giving up. Don’t do it! Posting on Connect is a good start and hopefully someone can provide information that will help. Here is a story that may help you know you are not alone:

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I'm also tagging a few members who have had difficulty getting a diagnosis. @lillone43, @heidisue, @kibwezi, @techi, @sacolucci can you offer any suggestions for @bunnysammy ?

One thing I can think of is to make a list of all your symptoms and questions and maybe a daily pain log rating your pain. Then take that with you to your doctors appointment and see if you can get some answers. It's so easy to forget to ask or tell the doctor your main questions during the appointment and the list can become your talking points.

John

Jump to this post

Thanks John:) I'll check out that Ted talk.
I've been writing down a log of my symptoms for the past month. I didn't really think about it before. Logging the pain scale is a good idea. I have a tendency to down play pain so if I write it down when it's happening I'll be more honest.

@beryl

I feel for you Bunny I too was six months before my Doctor took much notice of my condition….I had lost twenty pounds looked like heck and my husband was taking me every week to see him…..he still insisted that there was nothing wrong with me…..I think I have to explain that he thought in the first place that it was my heart and I went through all the tests for that ….at that time blood was drawn and didn't show anything wrong….so the Doctor would tell me that there was nothing wrong with me……I got so week that he took more blood ….phoned me that evening to tell me I hadn't been imanaging this and there was something wrong……I collapsed completely three days after and had to be taken into hospital…..
That was ten years ago and I have been attending OHSU ever since….so have faith I think you will be looked after once someone takes you seriously….keep talking to the Mayo Clinic it helps…..Beryl

Jump to this post

Oh no. That sounds terrible. I hate that sometimes it takes something extreme happening for doctors to believe people.

Thanks for the support:)

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.

@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.

Jump to this post

I set up an appointment with a rheumatologist who does naturopathic medicine and western. I've been writing everything down too. I just don't have anyone to talk to about it who gets it and I found this place. Last night the joints in my right hand were so painful I couldn't grasp anything and I had to cook with my left.

Also, thank you:)

@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.

Jump to this post

I just talked to mayo about my brain injury. The gal I talked to in neurology treated me terrible. 

@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.

Jump to this post

I'm so sorry:( I talked to my regular doctor (no longer my doctor) about my IBS and she said "I think you just have an eating disorder." Because I'm small so my symptoms didn't matter. It's so hard to find good doctors who know what they're doing and care.

We it is very hard to find doctors who care. Itbtok me 3 years and 3 rheumatologist to find one that cred. They are out there. You just have to be your own advocate and see as many doctors it takes.

@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

Hi! Hang in there! And start treating yourself for autoimmune in general ways AND learning more and more management tools for individual symptoms – WHILE you continue to look for that rheumatologist who guesses correctly what to test you for. (One day, we will use technology correctly and we won't need for doctors to guess which things to test you for anymore.)
Because it may take a year or more to get to a diagnosis of which autoimmune illness is attacking your joints and body (it may be as simple as RA though) it will be valuable to utilize over the counter things like ibuprofen and gluco- corticosteroid (Flonase/nasacort) sprays for inflammation and pain minimization. You might try 3 ibuprofen as soon as you feel the first twinge of inflammatory pain and then 3 more 3 hours later.
Other management tools I use run the gamut and include things like a daily walk, low/no sugar, no caffeine after 9am, no alcohol, very low/no carbs, sleeping at a significant incline, etc FIND WHAT WORKS FOR YOU.
Remember, even WITH a diagnosis, management tools will REMAIN the primary treatment strategy (there is no cure) so embrace them as a lifestyle and don't let yourself get caught up with the stress of not having a diagnosis.
Best of luck!

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.

@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

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

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!!

Please login or register to post a reply.