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.

@mschock

I just joined this site so am a little guarded about putting info out there. I’m stepping out of my comfort to interact. As for my Sx. I have many little issues from chronic nausea to joint pains. I’m dragging my feet making an appointment. I you were to see me I look like the picture of health

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Hello @mschock, I understand being guarded about sharing personal information and that’s a good thing. Autoimmune diagnosis can be very difficult due to the wide range of symptoms and how each person is affected. I’m glad you have an appointment setup to see a rheumatologist. I would write down all of your symptoms and questions you want to ask the doctor to help them in their diagnosis as suggested by @lisabeans. You also may want to try the Mayo Clinic Symptom Checker at this page – http://mayocl.in/1iuydNA.

Please keep asking questions and pushing for answers.

John

Thanks. Are there specific questions to ask and what types of test i.e.labs Would be appropriate

@mschock

Thanks. Are there specific questions to ask and what types of test i.e.labs Would be appropriate

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I wished I had a better answer but I think the questions needed to be asked are related to your symptoms and then discussing with the doctor what are the best treatments/options available to help with your condition. This site may give you more information…

Good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference.
https://labtestsonline.org/understanding/conditions/autoimmune/

John

@mschock

I suspect I also have an autoimmune issue. I am going to begin the diagnostic process soon by seeing a rheumatologist. Have a definitive dx would be a blessing for me.

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There is much to be said about journaling/logging.  From a multi perceptual view.  It helps our care giver better understand medical condition.  Nothing worse than a patient or peer, give wrong, or lacking information.  This goes for research or anything that is worthwhile, journaling/logging.  This is also critical in nursing, the work is not properly started or closed till the documentation.  So critical. JIM>>

@mschock

I suspect I also have an autoimmune issue. I am going to begin the diagnostic process soon by seeing a rheumatologist. Have a definitive dx would be a blessing for me.

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Thanks for the input

So many memories stirred by all of you. I began my journey 55 years ago, I was 15. My life of Crohn,s has been eventful. I joined the group because my experiences go back to times in medicine of “We don,t know what causes….” The answer is still the same for many of us. My answer is “You may not know the cause, but I need to know how to cope.” It is my hope to encouage and be encouraged.

@andrietta

So many memories stirred by all of you. I began my journey 55 years ago, I was 15. My life of Crohn,s has been eventful. I joined the group because my experiences go back to times in medicine of “We don,t know what causes….” The answer is still the same for many of us. My answer is “You may not know the cause, but I need to know how to cope.” It is my hope to encouage and be encouraged.

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Hello @andrietta – Welcome to Mayo Connect. Thank you for sharing some great insight. We all are searching for answers to understand, learn and cope. Knowledge and understanding go along way towards helping one cope and hopefully keep things in perspective.
John

Welcome to Connect, @andrietta. What a wonderful, hopeful view you have about life’s challenges!

Since you mentioned Crohn’s disease, I would sincerely encourage you to take a look at Mayo Clinic’s blog on Crohn’s Disease and Ulcerative Colitis: http://ibdblog.mayoclinic.org

@andrietta, do you have any questions or suggestions for Connect members? How are you managing the Crohn’s disease?

Get and read Jennifer Esposito’s book right away.
So many issues can be related to eating wheat, rye,
barley and sometimes oats and soy. No matter what the diagnosis or even negative test results
for autoimmune issues, these along with dairy
and grains and eggs can cause so much inflammation. None of us can give you a good answer just some good advice. Keep asking and soaking in all possible reasons. I read all the symptoms of Celiac and thought not me, until my nephew got type 1 diabetes, then I realized the genetic connections and understood autoimmune diseases better. I am a different person on a gluten zero diet. There are hundreds of symptoms. Get acquainted with them all. Mine are classic, but my sister has migraines depression and constipation. You will find your answer, never give up!!! Good thoughts of hope and healing!!

Liked by simmons78

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.

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?

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.

@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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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.

@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, 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

@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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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

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