Undiagnosed auto immune disease, put on Leflunomide

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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

HI, I am new to this site. I found your post when I was searching for help with my own symptoms. Thank you for sharing. I know it is difficult to have all these symptoms. Continually be switched from specialist to specialist. I am unsure how long you have had these symptoms. I too, was told I have auto immune disease from my primary doc. My symptoms began a year ago. First with severe dizziness. I was told stress., anxiety, narcolepsy ( I get to the point I will pass out if I lay on my left side)., different symptoms would come and go. I know the pain of sharp shooting in my bones. and the aching neuromuscular pain.
I went to endocrinologist, told I have Add to dictionary. I don’t believe I do. BTW, please let us know is this more on one side of the body? mine is the left side.
numbness stabbing pain left arm, now that is gone I get tremors. I have had 5 endovenous laser procedures, left lower leg to close off veins. they come right back. couldn’t walk. How is your balance? Have you though of seeing a neurologist t that specializes in auto immune? My ANA & Iga is off. Please have them check you for Epstein Bar virus, lupus and valley fever. to rule out . If your PCP has not recommend a specialist in Neuro, I would wonder why. Because the that MS is an autoimmune disease. That attacks central nervous system. Other types of autoimmune diseases include rheumatoid arthritis, psoriasis, Crohn’s disease, Type 1 diabetes, and lupus. In each of these conditions. Please let us know. Take care.

REPLY

Thank you so much for sharing all the information, @scottsdalehealth26; we’re glad to have you join this discussion. You’re right, in that autoimmune disease share so many symptoms, and can be tricky to diagnose.

@scottsdalehealth26, we would love to get to know you better; were you diagnosed with any of the issues you listed, above? Have you had to make significant life changes to find relief?

REPLY

That’s a tough row to how, Lisabeans. I have some of the same stuff, but not all. And I have several more issues that you apparently do not have. The worst problem in all of this is the hard work the doctors put in protecting the disease from me. I am pretty sure (about 99 % sure) that I have some form of amyloidosis, Primary, systemic, hereditary, AL, cardiac, pulmonary, cerebellar, osteopenic. But I have to rely on a few doctors who have agreed among themselves that there is no such thing as amyloidosis, and for several years they have followed this nonsense. I know now that my time is limited. I have several proven cancers, biopsied, etc. by Mayo. Now I am bleeding, losing my vision, worsening arrhythmia, constant pain everywhere, nodules and lesions in lungs, kidneys, liver, bladder, spleen, pancreas, brain, skin, etc. Yet I really have no problem, say my doctors. Sort of like a group of prosecutors choosing to defend the perpetrator from the ire of the victim. But don’t give up yet. Even if your time on earth is very limited, what you do with your time is in YOUR hands, not the doctor’s, not the pastor’s, nor the spouse, nor even POTUS. Not even Putin. Just accept the reality that you may have only a couple months left as your spot in eternity, and make the best of it in YOUR vision. Then in your last breath, you can be satisfied that you have done your best.

REPLY
@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.

Jump to this post

I’ve been following some online webinars given by health professionals. I learned that diet is just about everything, combined with supplements by a integrative functional practitioner or naturopath. I’ve given up gluten, dairy, soy, wheat for example, and nightshade vegetables are occasional, with cruciferous vegetables fermented or cooked. First I was on an anti-candida diet to detoxify yeasts, bacteria and then migrated to a Paleo Diet which helped immensely. But I was diagnosed with autoimmune disease as well as adrenal fatigue, joint swelling and inflammation (including face, hands and feet) which is all part of the autoimmune disorder. Leaky gut is to blame for a lot of this stuff, so healing the gut is really key. So I am now on an autoimmune Paleo diet and this works the best, at least for the time being, and then eventually I can go back to Paleo once my gut has healed. Healing the gut contributes to better brain activity and thyroid gland as well as other organs getting nourished in your body. I would say to forget all of these medications. It takes a radical change in your diet (but you’ll like it because you’ll lose weight as well as your appetite when you give up the processed foods and sugars). I only eat organic meats, vegetables, fruits (1-2 per day) and if I have grains, it is very occasionally and I do organic sprouted brown rice. Sprouted grains are better for the digestive system, I heard. Wild caught fish are fantastic to bump up your Omega 3’s (you have to increase these but I can’t tolerate flax). Wild caught meats are also fabulous for the digestive system (venison, bison, lamb, etc.) because they do not have any amyloid proteins which can be difficult to break down in regular meats. So enjoy an occasional lamb chop or elk burger (they serve the ladder at Fuddruckers by the way, as well as gluten-free buns and Bison burgers). I will never go back to the way I was eating. Today, I’m making chicken legs bone broth. This broth is supposed to be so great for building back the immune system so I would even say to have a cup or two (or three) weekly. You can make it with chicken bones, beef bones, etc. If you have a slow cooker, even better. Let it cook for a couple of hours or so and I always use spring or filtered water with organic vegetables. I include a salad daily – every single day, and add all kinds of lettuces, sprouts, anything I can find then with avocado, cucumber, scallion or red onion, etc. I use a homemade dressing made with apple cider vinegar because it is so great for the system and kills candida and bad bacteria. It also detoxes and balances the digestive system. Or you can use gluten free organic balsamic vinegar. So I’ll make a fresh batch of Italian dressing with all kinds of herbs (tarragon, oregano, basil, fresh garlic, Dijon or brown mustard, lemon, thyme, sea salt, ground pepper, cold-pressed virgin organic olive oil, touch of celery salt or onion salt). With autoimmune, you must exercise care in not using too hot of spices, extreme use of the nightshade vegetables (peppers, potatoes, tomatoes, etc.). Cruciferous vegetables such as cabbage, brussel sprouts, broccoli, cauliflower, Kale, Radish, Turnip, Arugula, Watercress, Rutabaga, Bok Choy, etc. should be cooked and not eaten raw. So I’ve ever dropped using some of these in salads or will cook them (or use them in soup uniquely). I’ve been following some exceptional nutritional coaches out there online who specialize in all kinds of diseases and disorders for health. They have wonderful “free” webinars and solutions to daily eating, mild exercise, strong sleep as well as water drinking and taking important supplements daily that will serve to complement your medications. Check with your doctor first but instead of this facebook, I would also join up with some of the free webinars which are fabulous, such as Dr. Jim Mercola; Dr. Izabella Wentz, PharmD (Hashimoto’s and Thyroid disorders); Dr. Alan Christianson (Adrenal Fatigue and gland disorders); Wellness Mama; Teri Cochrane; Lisa Richards (Candida Support); Laura Newby (MasterClasses – example “Get Your Gut Right”); and so many others like Joseph Cohen or Richard (Good-bye Leaky Gut). The world is your oyster — go pursue your own remedies because you are in control. Not your doctor.

REPLY
@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.

Jump to this post

Hello @larsona10, welcome to Connect. I think diet does play a major part in autoimmune diseases. I’m not quite there on a lot of the things you are doing but I have eliminated processed foods and greatly reduced my sugar intake. I started the basic Wahls protocol diet and did do gluten free, dairy free, sugar free for about a month. Dr Wahls has an amazing story to tell about eliminating her MS symptoms and going from a wheel chair to riding a bike again. She still has MS but has greatly improved her lifestyle which is where I think diet helps a person with an autoimmune disease.

I agree that you should go see your doctor first and that learning everything you can about your health issues is even better. This helps you become a better advocate for yourself. While there are a lot of great webinars available they do not necessarily help when you are wanting to talk with others that share your diagnosis and you want to get questions answered. That’s were Mayo Connect shines. It’s not Facebook. It is a patient to patient environment where your personal information is protected and not shared. In fact, you do not have to use your real name.

John

REPLY
@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.

Jump to this post

Sounds like you are doing great! Anyway, all I know is that they say the “gut” controls 80% of the immune system and has a direct impact on the mind. I never knew this before. So I have been quite amazed. I agree, also, that there are a lot of so-called “gurus” out there who just want to sell their products, and they may not be right for the individual. I’ll look into Dr. Wahls because that sounds interesting. Right now, I have: autoimmune (undiagnosed, no one knows where it is originating from), Rheumatoid Arthritis (the anti-body but not totally active yet), hyperthyroidism (possibly Graves), body inflammation, joint swelling, eye inflammation, hair falling out, dry skin, eczema, rashes, food intolerance, insomnia, high anxiety, mania, etc. I am just such a total mess that I’m not even sure its curable. Very depressing indeed. I’ll see how the May Connect works out. Thanks for writing. Amy

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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.

REPLY

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

REPLY

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.

REPLY
Please sign in or register to post a reply.
  Request Appointment