Undiagnosed auto immune disease

Posted by lisabeans @lisabeans, Feb 13, 2017

I have auto immune issues but am still undiagnosed. I have joint and muscle pains sometimes to the point that holding my son’s hand hurts. I have sensitivity to light and sun where I get very dizzy, nauseous and my face gets red on my cheeks and nose. I have an positive ana 1:160 homogenious. My rheumy started me on plaquanil and it worked okay but still has a lot of pain. Then tried sulfasalazine but my liver count went through the roof so we stopped that. Methotrexate made me very sick so now I am on Leflunomide. That has helped a bit but still have burning pains and my face is still red. I am seeing a new rheumotolgist in May while still seeing the guy I have been seeing. I do have ulcerative colitis which is in remission. I also have dry eye and get mouth sores. I am so confused (going on 2 years trying to get diagnosed). Any one else have similar symptoms and were diagnosed? I feel so lost.

@taterjoy

Hi LisaBeans. I am sorry you are suffering so, and are in limbo as far as a diagnosis. I hope you can find answers and effective treatments or non-drug modalities that will help. Good that your ulcerative colitis is in remission–hope it stays that way!

It sounds as though inflammation (skin and/or joints) and pain are key symptoms which may be why they are prescribing methotrexate (autoimmune inflammatory diseases such as Rheumatoid arthritis, psoriasis, or Lupus, which can be associated with elevated ANA). It appears also that you have symptoms of rosacea (facial redness). Your positive ANA could, instead, be due to other disorders such as Sjogren’s syndrome (dry eyes, join pain, dry mouth), joint pain, fatigue (and other symptoms). Lupus can cause facial rash, joint pain, and other symptoms; rheumatoid arthritis (RA) which usually presents as joint pain in specific “patterns” (specific joints, and/or affecting joint symmetrically meaning if your left hand is affected, most likely your right had is too, but not in EVERY case). There are other diagnoses that also may relate to positive ANA such as scleroderma, Felty’s syndrome, and others. You might google these conditions using each condition name as a search word, plus the word “symptoms” Maybe you will see a configuration of symptoms listed that will help identify which condition is most likely.

I also have positive ANA blood test results, and lupus was suspected. However, I do have at least four symptoms (from a larger list of lupus symptoms) required to be diagnosed with lupus. No specific pattern to definitely diagnose RA, or any of the autoimmune diseases often related to positive ANA. My endocrinologist stated that until a symptom pattern develops (a constellation of symptoms, lab results, or biopsy), it is difficult to diagnose specific conditions, many of which have symptom overlap.

I do have other autoimmune conditions such as hashimotos thyroiditis, rosacea, dry eye syndrome, psoriasis (elbows/knees/fingernails), porokeratosis (not really autoimmune, it’s an inherited disorder), mouth/nasal ulcers, and an undiagnosed episodic (occurring at irregular intervals, like a flare) inflammatory arthritis. For me, sun, situational stress, and acute illness are “stressors” on my immune system, which worsen my symptoms. Getting as much exercise as I am able, taking fish oil, and eating a high fiber diet avoiding processed foods are the main lifestyle measures I use to try to fight symptoms. I hope your specialist can help you find treatments and lifestyle measures to help you feel better.

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Hi Amy, I think you are absolutely correct when you say the gut controls 80% of the immune system. Reminds me of what I learned many many years ago in a land far far away – GIGO (garbage in, garbage out). Dr Wahls is hawking her book and a program but a book is cheap. Here’s the story that got me looking at diet – http://terrywahls.com/about/about-terry-wahls/. She has also given some Ted talks which are interesting which I believe are on YouTube. Good luck in your quest for knowledge and I am hoping you are able to get a diagnosis soon. Mayo Clinic are really the experts in providing a diagnosis for difficult and rare conditions. If you are interested and able to travel to one of the Mayo Clinic locations it might be worth your while to set up an appointment. Mayo Clinic Rochester, MN is especially good at it. I’m tagging @kdubois who may be able to shed some light on difficult to diagnose conditions. There are others on Connect that also share your situation.

Good luck in your search…
John

Liked by human724

@taterjoy

Hi LisaBeans. I am sorry you are suffering so, and are in limbo as far as a diagnosis. I hope you can find answers and effective treatments or non-drug modalities that will help. Good that your ulcerative colitis is in remission–hope it stays that way!

It sounds as though inflammation (skin and/or joints) and pain are key symptoms which may be why they are prescribing methotrexate (autoimmune inflammatory diseases such as Rheumatoid arthritis, psoriasis, or Lupus, which can be associated with elevated ANA). It appears also that you have symptoms of rosacea (facial redness). Your positive ANA could, instead, be due to other disorders such as Sjogren’s syndrome (dry eyes, join pain, dry mouth), joint pain, fatigue (and other symptoms). Lupus can cause facial rash, joint pain, and other symptoms; rheumatoid arthritis (RA) which usually presents as joint pain in specific “patterns” (specific joints, and/or affecting joint symmetrically meaning if your left hand is affected, most likely your right had is too, but not in EVERY case). There are other diagnoses that also may relate to positive ANA such as scleroderma, Felty’s syndrome, and others. You might google these conditions using each condition name as a search word, plus the word “symptoms” Maybe you will see a configuration of symptoms listed that will help identify which condition is most likely.

I also have positive ANA blood test results, and lupus was suspected. However, I do have at least four symptoms (from a larger list of lupus symptoms) required to be diagnosed with lupus. No specific pattern to definitely diagnose RA, or any of the autoimmune diseases often related to positive ANA. My endocrinologist stated that until a symptom pattern develops (a constellation of symptoms, lab results, or biopsy), it is difficult to diagnose specific conditions, many of which have symptom overlap.

I do have other autoimmune conditions such as hashimotos thyroiditis, rosacea, dry eye syndrome, psoriasis (elbows/knees/fingernails), porokeratosis (not really autoimmune, it’s an inherited disorder), mouth/nasal ulcers, and an undiagnosed episodic (occurring at irregular intervals, like a flare) inflammatory arthritis. For me, sun, situational stress, and acute illness are “stressors” on my immune system, which worsen my symptoms. Getting as much exercise as I am able, taking fish oil, and eating a high fiber diet avoiding processed foods are the main lifestyle measures I use to try to fight symptoms. I hope your specialist can help you find treatments and lifestyle measures to help you feel better.

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80% of the immune system is located in the gut.

@taterjoy

Hi LisaBeans. I am sorry you are suffering so, and are in limbo as far as a diagnosis. I hope you can find answers and effective treatments or non-drug modalities that will help. Good that your ulcerative colitis is in remission–hope it stays that way!

It sounds as though inflammation (skin and/or joints) and pain are key symptoms which may be why they are prescribing methotrexate (autoimmune inflammatory diseases such as Rheumatoid arthritis, psoriasis, or Lupus, which can be associated with elevated ANA). It appears also that you have symptoms of rosacea (facial redness). Your positive ANA could, instead, be due to other disorders such as Sjogren’s syndrome (dry eyes, join pain, dry mouth), joint pain, fatigue (and other symptoms). Lupus can cause facial rash, joint pain, and other symptoms; rheumatoid arthritis (RA) which usually presents as joint pain in specific “patterns” (specific joints, and/or affecting joint symmetrically meaning if your left hand is affected, most likely your right had is too, but not in EVERY case). There are other diagnoses that also may relate to positive ANA such as scleroderma, Felty’s syndrome, and others. You might google these conditions using each condition name as a search word, plus the word “symptoms” Maybe you will see a configuration of symptoms listed that will help identify which condition is most likely.

I also have positive ANA blood test results, and lupus was suspected. However, I do have at least four symptoms (from a larger list of lupus symptoms) required to be diagnosed with lupus. No specific pattern to definitely diagnose RA, or any of the autoimmune diseases often related to positive ANA. My endocrinologist stated that until a symptom pattern develops (a constellation of symptoms, lab results, or biopsy), it is difficult to diagnose specific conditions, many of which have symptom overlap.

I do have other autoimmune conditions such as hashimotos thyroiditis, rosacea, dry eye syndrome, psoriasis (elbows/knees/fingernails), porokeratosis (not really autoimmune, it’s an inherited disorder), mouth/nasal ulcers, and an undiagnosed episodic (occurring at irregular intervals, like a flare) inflammatory arthritis. For me, sun, situational stress, and acute illness are “stressors” on my immune system, which worsen my symptoms. Getting as much exercise as I am able, taking fish oil, and eating a high fiber diet avoiding processed foods are the main lifestyle measures I use to try to fight symptoms. I hope your specialist can help you find treatments and lifestyle measures to help you feel better.

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That’s right. I don’t think I said it correctly, but you are correct. I was amazed to learn that – they say the gut is “everything”.
Thanks for the correction. Amy

@taterjoy

Hi LisaBeans. I am sorry you are suffering so, and are in limbo as far as a diagnosis. I hope you can find answers and effective treatments or non-drug modalities that will help. Good that your ulcerative colitis is in remission–hope it stays that way!

It sounds as though inflammation (skin and/or joints) and pain are key symptoms which may be why they are prescribing methotrexate (autoimmune inflammatory diseases such as Rheumatoid arthritis, psoriasis, or Lupus, which can be associated with elevated ANA). It appears also that you have symptoms of rosacea (facial redness). Your positive ANA could, instead, be due to other disorders such as Sjogren’s syndrome (dry eyes, join pain, dry mouth), joint pain, fatigue (and other symptoms). Lupus can cause facial rash, joint pain, and other symptoms; rheumatoid arthritis (RA) which usually presents as joint pain in specific “patterns” (specific joints, and/or affecting joint symmetrically meaning if your left hand is affected, most likely your right had is too, but not in EVERY case). There are other diagnoses that also may relate to positive ANA such as scleroderma, Felty’s syndrome, and others. You might google these conditions using each condition name as a search word, plus the word “symptoms” Maybe you will see a configuration of symptoms listed that will help identify which condition is most likely.

I also have positive ANA blood test results, and lupus was suspected. However, I do have at least four symptoms (from a larger list of lupus symptoms) required to be diagnosed with lupus. No specific pattern to definitely diagnose RA, or any of the autoimmune diseases often related to positive ANA. My endocrinologist stated that until a symptom pattern develops (a constellation of symptoms, lab results, or biopsy), it is difficult to diagnose specific conditions, many of which have symptom overlap.

I do have other autoimmune conditions such as hashimotos thyroiditis, rosacea, dry eye syndrome, psoriasis (elbows/knees/fingernails), porokeratosis (not really autoimmune, it’s an inherited disorder), mouth/nasal ulcers, and an undiagnosed episodic (occurring at irregular intervals, like a flare) inflammatory arthritis. For me, sun, situational stress, and acute illness are “stressors” on my immune system, which worsen my symptoms. Getting as much exercise as I am able, taking fish oil, and eating a high fiber diet avoiding processed foods are the main lifestyle measures I use to try to fight symptoms. I hope your specialist can help you find treatments and lifestyle measures to help you feel better.

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Hello @larsona10,

I’d like to add my welcome, and thank you for sharing your information…and some great suggestions!
I’d like to invite @jewel8888 @dinym @guzmanbarb @kozlo52 @vickiekay @amihealthy @dogmamat @brie87144 @crhp194 @wesbig @soitis4590 @debdeb to join this discussion, as well.

@larsona10, since you mentioned ‘leaky gut’ I would encourage you to view this video from Mayo Clinic’s celiac blog, where Dr. Joseph Murray discusses the gut’s permeability: http://mayocl.in/2qwAjfr

As John mentioned, Mayo Clinic Connect is a great resource for patients and families. More than that, it is an online community where you can share experiences, find support and exchange information with people who’ve faced similar struggles, and conditions.
@larsona10, let us know how your appointment goes, and please keep us updated with your questions, or if you would like to share your insights.

Hi Lisa, although I’m no expert, I also have an undiagnosed autoimmune disorder of some kind, along with adrenal fatigue. When I shifted to an “Autoimmune Paleo” diet, it truly helped with the inflammation. My inner palms, face and feet were burning after consuming certain foods, or under stress. Dr. Izabella Wentz, Pharmacist, discusses it online as a thyroid expert. It’s called “Root Cause Autoimmune” diet. It includes most organic vegetables, fermented foods and organic meats with low-glycemic organic fruits. You are not allowed dairy (I still have an organic egg once or twice per week), grains, legumes, nightshades, nuts, seeds, sugar or seaweed. You are able to have coconut or brown shirataki yam noodles. Starting with the diet really brings the stress down of symptoms so that you can manage them better. But again, that’s what I did and not sure your situation is equal to mine. I’m also going to look into testing for amyloidosis, based on Karl’s comments and encouragement in previous posts. But tackling diet, in my opinion, is the first thing to do if an autoimmune situation is detected. Without diet protection, everything just begins to go down a notch. In the interim, you can have more labs run, more results and then subsequently and hopefully, some helpful supplements or medications. Amy

Thanks Amy. I did go on a vegan diet per doctor’s orders for a month trial to see if there was any difference. There was no relief at all and actually my reflux became worse from all the salads and vegetables. I am willing to try gluten free to see if that helps. I already have taken fried foods and fast food out of my diet.

@lisabeans , If I have got it right, I say that a great healthy well-rounded diet is the only thing that will make a good addition to your regimen. Some fish and poultry, veggie and fish or poultry soups(make your own with some healthy flavorings). I make my soups with a chunk of fish or poultry, vegetables, spices, and plenty of water. I take in 5-7 liters of liquid per day. If I do not I bleed profusely from inside. Some red meat (1-or 2 servings per week), lots of fibre, no salt or acid, and very little sugar, no overload of anything, just a little of a variety of veggie and fruit mix. Eat several very small meals per day, because your system can only handle a little at a time. Oh, and eat a little ice cream once a month or so, just to keep things(your mind) in balance. In short, This is not a disorder that is caused or triggered by faulty diet, but by faulty genes. If you want to swap genes with your neighbor,…

Thanks. I try to eat healthy but with 4 kids it isn’t always easy! My husband is sick as well (fibro from a car accident and gi issue where he has slow mobility in his gi tract and can’t eat much). He has sugar intolerance as well. So eating healthy has become a top priority but a bit difficult.

@lisabeans

Thanks Amy. I did go on a vegan diet per doctor’s orders for a month trial to see if there was any difference. There was no relief at all and actually my reflux became worse from all the salads and vegetables. I am willing to try gluten free to see if that helps. I already have taken fried foods and fast food out of my diet.

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Vegetarian diets are a little tricky because of the protein requirements by the body. Just so you know, I can’t live without meat. My body craves it – however, what I just did was to buy Dr. Jim Mercola’s latest book called “Fat for Fuel”. He discusses a well balanced meal in which proteins are measured and the body switches over and begins to burn fat instead of carbs (sugar). You get more cleaning burning of the body to prevent metabolic resistance when you switch to meat proteins and low net carbs, but he always recommends that you measure the amount of proteins. Because the low carb diets out there can do a lot of damage. So he also sells a nutritional “tracker” in which you determine your meals daily with the right amounts. I’m not saying you should do this but by all means, switch out of gluten eating and at least soy. I also found that dairy really destroys my system also. I love coconut yogurt! Almond yogurt is just OK. Eventually your body switches over from carb burning to fat burning, but it can take up to a few weeks or months. That is my game plan, to get my body and system working efficiently. Then you develop your brain mitochondria and repair cells, get organs nourished and replenished. Also, I will not eat regular foods from the super market. I shop 100% organic and it has made all of the difference in the world! There is no comparison and it is worth every penny. Organic lasts longer, tastes much better and your body detoxes and feels great in a relatively short period of time. Also, I’ve been gluten-free for years but am now autoimmune so I’m not eating much in the way of GF; you have to give up wheat. Wheat destroys your system period. It is genetically engineered and deserves no place in our culture. It’s a “fake” grain. Processed grains, too, do not work well so just about any flour (whether grainless or otherwise) is tough on the system if it’s processed, because it disturbs the “sugar” addiction and that all comes alive again. We are addicts when it comes to processed foods or sugars. We love our pizzas, hot pockets, cakes, candy, pie, baked goods, crackers, etc. But these things are really tough on the system because they elevate blood sugar so badly and are hard to process. You can try root cause analysis by trying to remove one thing at a time and seeing how that goes. But start with gluten and soy — then do dairy to eliminate casein. Those 3 are the major culprits unless the dairy is raw and unfiltered, like raw grass-fed butter which I’ve heard is excellent. Also, kefir is excellent for the body as well as fermented foods (sauerkraut, kimchi), organic vegetables that do not include many nightshades (potatoes, peppers, eggplant, radish, cabbage, etc.) which I have occasionally, etc. Also, I only cook cruciferous vegetables (never raw) which are broccoli, cauliflower, brussel sprouts, kale, etc. because they cause inflammation. I have an autoimmune condition in which I have to watch everything I eat. But 80% of your immune system is located in the gut, I’ve heard, so unless you address your diet, you might struggle for quite some time without the added energy to figure out the cause. The gut is everything, they say, and so the diet goes. I don’t listen to a doctor for these things; I go out online, take webinars, listen to nutritional experts, go to a naturopath and integrative functional practitioner medical doctor and skip the typical “doctor” visits in which your primary doctor only knows how to treat your systems with a medication. You have to become the expert.

@taterjoy

Hi LisaBeans. I am sorry you are suffering so, and are in limbo as far as a diagnosis. I hope you can find answers and effective treatments or non-drug modalities that will help. Good that your ulcerative colitis is in remission–hope it stays that way!

It sounds as though inflammation (skin and/or joints) and pain are key symptoms which may be why they are prescribing methotrexate (autoimmune inflammatory diseases such as Rheumatoid arthritis, psoriasis, or Lupus, which can be associated with elevated ANA). It appears also that you have symptoms of rosacea (facial redness). Your positive ANA could, instead, be due to other disorders such as Sjogren’s syndrome (dry eyes, join pain, dry mouth), joint pain, fatigue (and other symptoms). Lupus can cause facial rash, joint pain, and other symptoms; rheumatoid arthritis (RA) which usually presents as joint pain in specific “patterns” (specific joints, and/or affecting joint symmetrically meaning if your left hand is affected, most likely your right had is too, but not in EVERY case). There are other diagnoses that also may relate to positive ANA such as scleroderma, Felty’s syndrome, and others. You might google these conditions using each condition name as a search word, plus the word “symptoms” Maybe you will see a configuration of symptoms listed that will help identify which condition is most likely.

I also have positive ANA blood test results, and lupus was suspected. However, I do have at least four symptoms (from a larger list of lupus symptoms) required to be diagnosed with lupus. No specific pattern to definitely diagnose RA, or any of the autoimmune diseases often related to positive ANA. My endocrinologist stated that until a symptom pattern develops (a constellation of symptoms, lab results, or biopsy), it is difficult to diagnose specific conditions, many of which have symptom overlap.

I do have other autoimmune conditions such as hashimotos thyroiditis, rosacea, dry eye syndrome, psoriasis (elbows/knees/fingernails), porokeratosis (not really autoimmune, it’s an inherited disorder), mouth/nasal ulcers, and an undiagnosed episodic (occurring at irregular intervals, like a flare) inflammatory arthritis. For me, sun, situational stress, and acute illness are “stressors” on my immune system, which worsen my symptoms. Getting as much exercise as I am able, taking fish oil, and eating a high fiber diet avoiding processed foods are the main lifestyle measures I use to try to fight symptoms. I hope your specialist can help you find treatments and lifestyle measures to help you feel better.

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@larson10 Have you ever been tested for mast cell activation syndrome?

@taterjoy

Hi LisaBeans. I am sorry you are suffering so, and are in limbo as far as a diagnosis. I hope you can find answers and effective treatments or non-drug modalities that will help. Good that your ulcerative colitis is in remission–hope it stays that way!

It sounds as though inflammation (skin and/or joints) and pain are key symptoms which may be why they are prescribing methotrexate (autoimmune inflammatory diseases such as Rheumatoid arthritis, psoriasis, or Lupus, which can be associated with elevated ANA). It appears also that you have symptoms of rosacea (facial redness). Your positive ANA could, instead, be due to other disorders such as Sjogren’s syndrome (dry eyes, join pain, dry mouth), joint pain, fatigue (and other symptoms). Lupus can cause facial rash, joint pain, and other symptoms; rheumatoid arthritis (RA) which usually presents as joint pain in specific “patterns” (specific joints, and/or affecting joint symmetrically meaning if your left hand is affected, most likely your right had is too, but not in EVERY case). There are other diagnoses that also may relate to positive ANA such as scleroderma, Felty’s syndrome, and others. You might google these conditions using each condition name as a search word, plus the word “symptoms” Maybe you will see a configuration of symptoms listed that will help identify which condition is most likely.

I also have positive ANA blood test results, and lupus was suspected. However, I do have at least four symptoms (from a larger list of lupus symptoms) required to be diagnosed with lupus. No specific pattern to definitely diagnose RA, or any of the autoimmune diseases often related to positive ANA. My endocrinologist stated that until a symptom pattern develops (a constellation of symptoms, lab results, or biopsy), it is difficult to diagnose specific conditions, many of which have symptom overlap.

I do have other autoimmune conditions such as hashimotos thyroiditis, rosacea, dry eye syndrome, psoriasis (elbows/knees/fingernails), porokeratosis (not really autoimmune, it’s an inherited disorder), mouth/nasal ulcers, and an undiagnosed episodic (occurring at irregular intervals, like a flare) inflammatory arthritis. For me, sun, situational stress, and acute illness are “stressors” on my immune system, which worsen my symptoms. Getting as much exercise as I am able, taking fish oil, and eating a high fiber diet avoiding processed foods are the main lifestyle measures I use to try to fight symptoms. I hope your specialist can help you find treatments and lifestyle measures to help you feel better.

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No, I haven’t. But it just seems like the combination of adrenal fatigue, autoimmune and thyroid disease are actually getting worse for me with supplements which have been recommended. What is mast cell activation syndrome all about?

HI guys I was diagnosed with crohns disease last june and would love to meet other people and hear their story. Thanks for all your input on your trials and success .

@tracyann

HI guys I was diagnosed with crohns disease last june and would love to meet other people and hear their story. Thanks for all your input on your trials and success .

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Hi @tracyann, and welcome to Connect,

My sincere apologies for the tardy reply, but somehow your message slipped past me; I’m so glad you’ve joined this group.

I’d like to start by connecting you with other members who have experience with Crohn’s — either themselves or a family member. @bonitav @mswanda @kaycigirl @judylindholm @gillyk14 @thankful @spiderwebb @jay_baruch @guener @bonitav @joannem @chicoco @gillyk14 @kaycigirl, please meet @tracyann, who would like to learn from your journey, and how you have managed living with Crohn’s disease.

TracyAnn, you may also wish to post your message in this discussion on Connect:
Crohn’s disease http://mayocl.in/2ummHmB

I would sincerely encourage you to view Mayo Clinic’s IBD blog, http://ibdblog.mayoclinic.org, where Mayo Clinic experts talk about Crohn’s disease & ulcerative colitis, and various treatments, ongoing research, current events.

We look forward to getting to know more about you, @tracyann. What type of foods help you? Have you been prescribed any medication?

@tracyann

HI guys I was diagnosed with crohns disease last june and would love to meet other people and hear their story. Thanks for all your input on your trials and success .

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@tracyann Just a quick note. My sister is in the final stages of life with Crohn’s. She is a patient at MD Anderson (Houston), and one of about 15 in our close family with various types of amyloidosis (Plasma Cell Dyskrasias–Protein misfolding, etc.) It is rough, and she has always been very healthy. All the eight siblings have some show of protein disorders, plus at least four of the next generation. One sibling (70) and her daughter (50) have died. It is not easy to face. But eat a good diet, keep exercising when you can, and ask a lot of questions, watch many videos, read what you can. My eyesight is going, so I will probably be limited.

Thank you for the insight, @oldkarl; I’m so sorry to hear about your sister. Please keep the Connect community updated, and continue to post and share…we’re listening.

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