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bunnysammy (@bunnysammy)

Autoimmune diagnosing

Autoimmune Diseases | Last Active: Apr 28 2:55pm | Replies (117)

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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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Replies to "Hi! Hang in there! And start treating yourself for autoimmune in general ways AND learning more..."

Thank you so much for the suggestions! I've been trying to avoid taking a lot of ibuprofen but I've recently given up on that idea haha. Tiger balm is also a good one for outer pain. I sleep at an incline when I get chest pains. It doesn't stop them but it does help. I saw someone suggesting something call a back pod I think from Amazon that helps with chest pains. I might try that too.

I'm nervous about the diagnosis taking a long time. It's strange… everyday something new hurts. Today I started getting sharp pains around where one of my kidneys are. It's worrying me.

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?

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

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

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

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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