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lisabeans
@lisabeans

Posts: 85
Joined: Feb 13, 2017

Undiagnosed auto immune disease

Posted by @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.

REPLY

Hello @lisabeans,

I’m sorry to learn that you are going through so much! You’ve come to a great place on Connect, where you will meet a wonderful, supportive community ready to help you, and find some answers.

Since you mentioned having a positive ANA, I’d like to start by introducing you to a few members with very similar conditions. Please meet @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy. I sincerely hope they will join this discussion.

@lisabeans, how have you been coping so far?

I have aches I my joints, dry mouth and eyes, abdominal pain , ear aches nausea sores in mouth, psoriasis on scalp.

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.

Thank you all for your responses. I am coping okay I guess. Most of my concentration goes to my husband who is on disability right now. And the kids. That keeps me pretty busy. My pain is at a decent level right now but the dizziness is bad. I am getting tested for verigo. Seems never ending.

Hi @lisabeans,

I thought you might want to connect with @mdotsie, @claudia11, @amtxo1989, @jczarkowski1270, all here discussing their vertigo experiences. Here is a link to that discussion taking place: http://mayocl.in/2lhF8X8
Teresa, one of our Mentors (@hopeful33250) may also have some insight.

@lisabeans, are there certain times in the day when the dizziness is at its worst?

@lisabeans You are dealing with a lot of different issues and I’m sure that it is distressing not to have any real answers or plan of treatment. The question that @kanaazpereira asked (time of the day when the dizziness is at it’s worst) is a good question to consider. Have you ever kept a journal of your symptoms? Even just noting the day and time of the dizziness and what you were doing at the time might be helpful. It sounds like you already have a lot of specialists, however, consulting with an ENT might also be a good idea. When I was dealing with vertigo, I began to notice that bending down a lot increased the vertigo, but not until the following day. Give the journal idea a try and see if you can pick up any patterns regarding the symptom. You certainly have a lot of on your plate right now and I wish you well as you work through these medical issues. Best wishes. Teresa

@hopeful33250

@lisabeans You are dealing with a lot of different issues and I’m sure that it is distressing not to have any real answers or plan of treatment. The question that @kanaazpereira asked (time of the day when the dizziness is at it’s worst) is a good question to consider. Have you ever kept a journal of your symptoms? Even just noting the day and time of the dizziness and what you were doing at the time might be helpful. It sounds like you already have a lot of specialists, however, consulting with an ENT might also be a good idea. When I was dealing with vertigo, I began to notice that bending down a lot increased the vertigo, but not until the following day. Give the journal idea a try and see if you can pick up any patterns regarding the symptom. You certainly have a lot of on your plate right now and I wish you well as you work through these medical issues. Best wishes. Teresa

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Thank you. My dizziness definitely gets worse by bending down or moving my head left to right. It also gets bad if I am around flourscent lights too long. I go back to my primary soon for more testing. I will ask about an ent. I just started to journal everything since we have to journal my husbands stuff. Seems like the more active I am, the worse the dizziness is.

@hopeful33250

@lisabeans You are dealing with a lot of different issues and I’m sure that it is distressing not to have any real answers or plan of treatment. The question that @kanaazpereira asked (time of the day when the dizziness is at it’s worst) is a good question to consider. Have you ever kept a journal of your symptoms? Even just noting the day and time of the dizziness and what you were doing at the time might be helpful. It sounds like you already have a lot of specialists, however, consulting with an ENT might also be a good idea. When I was dealing with vertigo, I began to notice that bending down a lot increased the vertigo, but not until the following day. Give the journal idea a try and see if you can pick up any patterns regarding the symptom. You certainly have a lot of on your plate right now and I wish you well as you work through these medical issues. Best wishes. Teresa

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Hi @lisabeans, It sounds as if you are taking a great approach to tracking down the source of your problems. Have you had any MRIs of your neck/head? You mentioned that the more active you get the worse the dizziness is, have you ever been evaluated by a cardiologist? That might be a good idea as well. You do not mention your age of other meds you might be taking, however, there are so many reasons for dizziness/vertigo symptoms. It is a puzzle and one that often takes a lot of time. Keep in touch~ Teresa

@kanaazpereira

Hi @lisabeans,

I thought you might want to connect with @mdotsie, @claudia11, @amtxo1989, @jczarkowski1270, all here discussing their vertigo experiences. Here is a link to that discussion taking place: http://mayocl.in/2lhF8X8
Teresa, one of our Mentors (@hopeful33250) may also have some insight.

@lisabeans, are there certain times in the day when the dizziness is at its worst?

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It been about a year and half that I been having this dizziness.  In the research I know it is not vertigo(spin); and I am most stable driving, and no symptoms while in supine/sleeping position. I studied ataxia , proprioceptive aspects, on and on.  Yes the symptoms are less, mainly in early morning.  Plus I use some food medicine(ginger, turmeric)quercetin to allay symptoms.  I will follow up with first visit to neurologist (based on my MRI I had in 2015).  Also had an interesting experience lately, when one is faced with some anxiety(for me, started to do some carpentry work), a momentary dizziness(slight) for short while….evidenced that some dizziness is related to anxiety(especially if chronic), not as the main cause, but secondary.  Central type dizziness can imply many dynamics.  JIM>>>>>>>

@hopeful33250

@lisabeans You are dealing with a lot of different issues and I’m sure that it is distressing not to have any real answers or plan of treatment. The question that @kanaazpereira asked (time of the day when the dizziness is at it’s worst) is a good question to consider. Have you ever kept a journal of your symptoms? Even just noting the day and time of the dizziness and what you were doing at the time might be helpful. It sounds like you already have a lot of specialists, however, consulting with an ENT might also be a good idea. When I was dealing with vertigo, I began to notice that bending down a lot increased the vertigo, but not until the following day. Give the journal idea a try and see if you can pick up any patterns regarding the symptom. You certainly have a lot of on your plate right now and I wish you well as you work through these medical issues. Best wishes. Teresa

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Thanks Teresa. I have not had an mri or anything yet. I am taking allegra and singualr for allergies. I take align probiotic. My doctor game melizine for the dizziness and amitriptyline to prevent the migraines. I am taking Leflunomide for the inflammatory issues as well. My primary went through my list and did not think it was medicine induced especially since the dizziness started prior to starting leflunomide. I did have echo cardiogram done to see why my feet keep swelling and it was normal. I go back to my rhuemy and primary next week. I am changing rheumotologist but can’t see him until May.

@hopeful33250

@lisabeans You are dealing with a lot of different issues and I’m sure that it is distressing not to have any real answers or plan of treatment. The question that @kanaazpereira asked (time of the day when the dizziness is at it’s worst) is a good question to consider. Have you ever kept a journal of your symptoms? Even just noting the day and time of the dizziness and what you were doing at the time might be helpful. It sounds like you already have a lot of specialists, however, consulting with an ENT might also be a good idea. When I was dealing with vertigo, I began to notice that bending down a lot increased the vertigo, but not until the following day. Give the journal idea a try and see if you can pick up any patterns regarding the symptom. You certainly have a lot of on your plate right now and I wish you well as you work through these medical issues. Best wishes. Teresa

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@lisabeans I’m glad to hear that you and your doc are looking at many different areas, that is good. A closer look at the head/neck might be a good next step along with the ENT. My ENT did an MRI of the head to check for the possibility of a tumor near the ear area and it was clear. The anti-vert med you are taking is a good one. I keep it on hand, especially when traveling. I was in a revolving restaurant one time when traveling and the next morning woke up with the world spinning and I was glad to have the anti-vert in my suitcase. Keep in touch as we will be concerned about you. Teresa

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.

@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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Good luck to you. One thing that helps is writing down all your symptoms no matter how minor they seem. If you are anything like me, without it written down you will forget symptoms.

@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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Hello @mschock, and welcome to Connect.

There are so many types of autoimmune diseases, and many of them have similar symptoms, which makes them very difficult to diagnose.
What symptoms are you experiencing? Do you have any advice that might help other Connect members with similar experiences?

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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