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 group.

@sita

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

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Are you instate or out of State for Mayo? I wonder if that makes a difference?

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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 – We are in state and we still have to go through the process.

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@sita

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

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Thanks!

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Hey guys, update again. I got my blood test results back. I tested positive for ANA and then I think she said I tested positive for 3 rhumeatoid Arthritis markers and one of them was pretty high. I don't have joint swelling though… so I'm getting n MRI to see if it's early rhumeatoid and get a picture of what you can't see on the outside. She's worried about auto immune neuropathy too.. so booking an appointment with a neurologist too.

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@bunnysammy

Hey guys, update again. I got my blood test results back. I tested positive for ANA and then I think she said I tested positive for 3 rhumeatoid Arthritis markers and one of them was pretty high. I don't have joint swelling though… so I'm getting n MRI to see if it's early rhumeatoid and get a picture of what you can't see on the outside. She's worried about auto immune neuropathy too.. so booking an appointment with a neurologist too.

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Good to hear you are on your way to being diagnosed …..good luck with the rest…..Beryl

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@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

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It was very frustrating for me. I was told I had Rheumatoid but now my doc says Psoriatic Arth. I just had a flare and I can't tolerate steroids. Keep looking for a kind Doctor. The pattern of your pain and exactly what hurts is an important path to diagnosis. Best wishes

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@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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I have four autoimmune diseases, most recently diagnosed with mesentery panniculitis which causes days of stomach cramping. I take three ibuprophen but take Zantac (ranitidine) with it to alleviate more stomach distress. Have had a mild form of MS for 16 years, started with vision problems but now mostly have fatigue, esp. worse after several days of cramping from the other illness. Also have macroscopic colitis and lichen sclerosis. Am watching the series "Autoimmune Secrets" by Jonathan Otto and wondering if I should try his protocols…expensive as they are. Any one with experience with that?

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@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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Hello @sjean, Welcome to Connect. I kind of worry when I see magic solutions to autoimmune diseases. Eating health definitely helps along with exercise and learning as much as you can about your specific health issues. I am not familiar with Jonathan Otto or his protocols so maybe someone who has tried it can give you a thumbs up or down. I can share that I've tried many different things for my peripheral neuropathy and spent a lot of money for minimal to no help. I would recommend evaluating what he's selling if possible. I use a lot of the following sites when I'm trying to find out if something is legit or safe. Anything that's proprietary and spendy is a red flag for me.

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

What got me to looking at nutrition at the cellular level was a book by Dr. Terry Wahls – The Wahls Protocol. I did buy the book after reading her story of curing the symptoms (not the disease) of her MS. Here is her story – https://terrywahls.com/about/about-terry-wahls/

@sjean – have you tried anything else for treatments?

John

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@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

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@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,

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

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@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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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.

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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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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.

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