Strange symptoms that seem autoimmune related

Posted by jas9799 @jas9799, Oct 11 7:30am

Hello! I'm new here to Mayo Clinic Connect. For the past 4-5 months, my mom has had sporadic facial swelling (including her tongue), under her feet, hands and other parts of her body. She says it starts slowly and then it swells up a lot (like a red bump) and slowly goes down. Just yesterday, a stressful situation happened and her fingers immediately started swelling up. She went to sleep fine and woke up with a swollen tongue (she can breathe and drink). It's the second time this has happened.

When the swollen patches come out on her foot or hands, it can also cause itching. After a while, the swollen patches go down and then come back again. We've gone to the emergency twice already.

The first time she was given methylprednisolone and it brought down the swelling; but as soon as she started tapering it off, she started swelling again. The second time we went to the emergency, they gave her Allegra for the swelling and it helped, but the swelling keeps occurring sporadically.

We went to her general doctor, but he said he didn't know what it was. She recently had some tests done to check her kidneys and came back with a slightly high numbers of BUN, protein and cholesterol. However, the doctor didn't think the swelling was associated with it. She's modified her diet to reduce protein intake, but she's still getting swollen without eating any protein at all.

I'm wondering what specialist would be best for her to see. I think it might be some type of immune response (autoimmune diseases are common in the family). She's been diagnosed with Lichen pinus (about 5 years ago), but I don't think these symptoms are common for Lichen. (She doesn't take prednisone on a daily basis). She also has hypothyroidism, but recently her tests came out fine.

Any suggestions are greatly appreciated.

@jas9799 Welcome to Mayo Clinic Connect. We are patients/family members/caregivers who share our own experiences and help others on their journeys.

It must be scary to see your mother go through these episodes! One thing to have her do would be to keep a log of when these events happen, what she was doing/eating/location, etc. This may help you and the drs see a pattern of the symptoms. For me, it gives me information to share with my dr, so I am not trying to recall everything when under the added stress of being on a dr office!

As far as where to turn to, check with her primary doctor, and see if you can get a referral to a rheumatologist, who deals in autoimmune conditions. There might also be an environmental specialist who could look to see if there is a trigger for these episodes. Seeing that we are changing seasons, perhaps your mother is experiencing a reaction to something brought on by the change?

Please let us know what she decides to do, and how we can help further.
Ginger

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Hi Ginger! Thanks for the quick reply!

We've been keeping a log of what she's been eating, but I'll try to keep a log of what she's doing or where she's been. I know that yesterday was definitely stressful and she reacted immediately with swollen fingers and then later on, the swollen tongue.

Personally, I don't think environmental triggers are causing this because we live on a tropical island, so the weather is pretty consistent (we have no real seasons). About the primary doctor, he seemed clueless, so I'm already looking for another one (internal medicine, preferably). I will check for a rheumatologist, though. I think that's the way to go.

Once again, thanks for the help!

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@jas9799

Hi Ginger! Thanks for the quick reply!

We've been keeping a log of what she's been eating, but I'll try to keep a log of what she's doing or where she's been. I know that yesterday was definitely stressful and she reacted immediately with swollen fingers and then later on, the swollen tongue.

Personally, I don't think environmental triggers are causing this because we live on a tropical island, so the weather is pretty consistent (we have no real seasons). About the primary doctor, he seemed clueless, so I'm already looking for another one (internal medicine, preferably). I will check for a rheumatologist, though. I think that's the way to go.

Once again, thanks for the help!

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@jas9799 You're welcome! As I read your response, what came to mind was a stress reaction. What about trying some relaxation techniques? Deep breathing, a walk, some form of creative outlet [crochet, painting, pottery], cooking, something that might take her mind off of a trigger?

As I have experienced challenges, I find that during the day, I can put aside for the most part, the triggers that get me so nervous and anxious, because I am doing things. When I get a chance to quiet down, sometimes those triggers come out to play, and get me amped up. It can be very tiring and cause my whole body to react. Do you think perhaps your mother may be dealing with the same type of thing? I have to make a conscious effort to refocus my thought pattern and react in a more positive way.
Ginger

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Thanks for the ideas! I told my mom to not watch or do anything stressful. I also asked her about other possible symptoms, because I've noticed how most of the major swelling occurs near or in the area of the salivary glands (although other areas have swelled up). She also told me that her mouth is dry and she feels like she has something in her eye. I'm worried that this may be an onset for Sjogren's disease (which I've had for over 10 years). And, if it is, it can be triggered by stress. Anyway, the best way is to see a rheumatologist and get the right tests and evaluation done. But until then, will try to keep her relaxed as best I can, with God's help.

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@jas9799

Thanks for the ideas! I told my mom to not watch or do anything stressful. I also asked her about other possible symptoms, because I've noticed how most of the major swelling occurs near or in the area of the salivary glands (although other areas have swelled up). She also told me that her mouth is dry and she feels like she has something in her eye. I'm worried that this may be an onset for Sjogren's disease (which I've had for over 10 years). And, if it is, it can be triggered by stress. Anyway, the best way is to see a rheumatologist and get the right tests and evaluation done. But until then, will try to keep her relaxed as best I can, with God's help.

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@jas9799 Just wondering how your mother is doing. Has she been able to see a rheumatologist?

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Hi Becky! Sorry for my delay in getting back to you. We actually went to an internal medicine doctor and he was very helpful. Going to do a couple of autoimmune tests and for her kidneys. He actually thought it was more of an angioedema, so he prescribed an allergy pill and also changed her high blood pressure pill to see if she's developing an allergy after so many years with it. So far, no more sudden swelling! Thank God! And she's doing better emotionally, too. It took a toll on her thinking she would wake up with her tongue so swollen that she couldn't breathe. But, so far, everything looks good. Thanks for asking! 🙂

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@jas9799 I’m so glad you got some help for your mom! Both of you are going to sleep better. Will you keep me posted on how she is doing?

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The Emergency Rooms are always wrong about things like this. A rheumatologist needs to see her and do a blood work up of autoimmune things

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@blondie01

The Emergency Rooms are always wrong about things like this. A rheumatologist needs to see her and do a blood work up of autoimmune things

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Hi Blondie, welcome to the group. I see you just joined. What autoimmune disease(s) do you live with?

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