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.

Mentor
John, Volunteer Mentor | @johnbishop | Aug 5, 2018
In reply to @caroleramsay "Hi! Hang in there! And start treating yourself for autoimmune in general ways AND learning more..." + (show)
@caroleramsay

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!

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Hi @sjean — has your doctor recommended any kind of diet or food to help with the stomach cramping? I’m just wondering if some food intake might be worsening some of your symptoms. Mayo Clinic has some recommendations on their website for the treatment of microscopic colitis.

— https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/diagnosis-treatment/drc-20351483

John

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Aug 5, 2018
In reply to @caroleramsay "Hi! Hang in there! And start treating yourself for autoimmune in general ways AND learning more..." + (show)
@caroleramsay

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!

Jump to this post

Hi @sjean,

I'd also sincerely encourage you to go through this discussion where many Connect members have shared their experiences about mesenteric panniculitis, https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

When considering complementary or alternative treatments, Mayo Clinic advises that people consult with their current care provider before making any changes to their existing medication or treatment plan, and learn about the potential benefits and risks. Here is an article from Mayo Clinic, that might interest you about evaluating claims made by the producers and/or sellers of supplements, natural products and other alternative medicines. http://mayocl.in/2tGC0Jp

REPLY
sjean | @sjean | Aug 5, 2018
In reply to @caroleramsay "Hi! Hang in there! And start treating yourself for autoimmune in general ways AND learning more..." + (show)
@caroleramsay

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!

Jump to this post

Thank you, John. I've an appt. with my GI Dr. to discuss foods and whether I might have leaky gut in relation to microcolitis. Could leaky gut have caused the mesentery problem??! My GI Dr. has me on budesonide and Cholestid. I'll ask her about some of the others meds I am lactose intolerant so I'm off dairy, and have begun a non-gluten regimen and know a bland diet serves me best.

REPLY
wandahondaconda | @wandahondaconda | Aug 15, 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.

Jump to this post

I am now 71 years old and still no diagnosis. (My symptoms seem to line up with ME-CFS.) The older I get, the more my symptoms seem to be skimmed over by doctors and my increasing age makes me appear less reliable as a reporter of these symptoms. The doctors I have seen want to push me into the "Depression Corner" of the room even as I explain myself: This is not depression - it is an understandable and reasonable response to all symptoms I have described - I am greatly discouraged and have less and less desire to participate in those things I used to love. I am a retired LPC. I have begun to see that older people are given less quality attention! Because we have less life to live so "what the heck?" I am exhausted due to these symptoms and due to the lack of acknowledgement and impatient treatment of doctors. I'm at the point of giving up on doctors - but then what? Thank you for allowing me to vent.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 15, 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.

Jump to this post

Hello @wandahondaconda -- Welcome to Connect. I'm glad you found us. Connect is a safe place ask questions and learn what others with similar health problems are doing for treatment...and yes we sometimes have to vent and that's OK. You mention your symptoms seem to line up with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME-CFS). There are a couple of existing discussions that you may want to read and meet others with your symptoms and find out what they are doing for treatments.

Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
-- https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
-- https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Hoping you find some answers to help you retrain/enlighten your doctors.

John

REPLY
dntsass01 | @dntsass01 | Aug 15, 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.

Jump to this post

I know your frustration @wandahondaconda. I'm sorry that you feel un-noticed. Please don't give up! I have several autoimmune diseases and it seems sometimes like no one is hearing me. Most of these symptoms are so hard to describe to people and then of course they chime in with "oh, I have that too, it sucks getting old." I mostly hear that from friends and family. I have had some great doctors at Mayo Clinic who listen to me and try to understand what I am going through. The day a doctor told me I definitely did have Fibromyalgia and that I wasn't crazy, was one the the happiest days I had had in a while. Hang in there!!

REPLY
lioness | @lioness | Aug 15, 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.

Jump to this post

@dntsass01 Hi I,ve had fibromyalgia over 30 years back then no one new what it was ,we had to trial @error to see how we good feel better Find a fibro group to talk to this helps Ive posted here in other post as to what I do for relieve Are you seeing a rheumatologist? ,this is the Dr that gave me relief.There are alot of this ngs you can do to help yourself besides medicine.

REPLY
Lisa | @techi | Aug 15, 2018
In reply to @johnbishop "Hello @bunnysammy – Welcome to Mayo Connect. I’m happy you found us. Connect is a good..." + (show)
@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

@john l jusy want to ask you a question. My ammonia levels were up 3 time. The last time about 4day ago l went to my rheumatologist for a regular checkup, l was filling out the routine paperwork and just fell in the office and my mouth was bleeding. I texted my husband in was in the car to tell him what happened so my hematologist wanted me to come to the hospital which l don't like going to anymore. So everything came back normal at it usually does. So they wanted me admitted lwanted to go home but the said l need to see a neurologist. Now this is the one that said l have conversion disorder. I had an episode with falling, unable to get up and now vomiting again they say its stress and they saw l was having problems with walking again
Has this ever happened to you before?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 15, 2018
In reply to @johnbishop "Hello @bunnysammy – Welcome to Mayo Connect. I’m happy you found us. Connect is a good..." + (show)
@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

Hi @techi - I wasn't sure if your post was for me or not. It looks like @john is no longer around since he has never posted if you look at his profile by clicking on his name. If your question was for me, I have never had what you had happen to me. Were they able to find out anything when you stayed overnight at the hospital? Did you see the neurologist?

John @johnbishop

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 15, 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.

Jump to this post

@tina5 I know for a fact that Mayo doesn't want anybody mistreated. Please report that incident, they like to know if an employee is not being respectful of the patients. Thank you.

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