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undiagnosed symptoms
My 19yo daughter has had strange symptoms that come and go for year. Beginning when she was about 10, she would break out in hives. At first, from head to toe. Sometimes just in smaller areas. We saw the dermatologist and allergist for testing (lupus, arthritis, allergies) and all testing showed negative. Later she would get hives more often. She will often get hives now from just showering (not from soap, just when the water hits her). Very cold weather also breaks her out in hives.
She began later having other symptoms like swollen hands. They didn't always look obviously swollen but she said it was hard to bend them. Sometimes after the puffiness is gone, she experiences joint pain in her hands. She says it feels like the joints are "sticky" sometimes. She has these tiny They just come and go.
She was tested again later for things. Again the tests for lupus, arthritis and allergies came out negative. She sometimes tests positive for the C4 protein I think? Which indicates possible autoimmune disease (which many forms of run through our family). She was further tested for the C1, which indicates a handful of specific diseases. The Dr. was thinking the symptoms pointed to angioedema. She tested positive for the C1 portion, but not with further testing so he ruled that out and told us he didn't know what it was. Other times her C1 tests are in normal range.
She has also had her thryoid tested and was found to be slighly low, but having meds to improve it didn't change her pattern of symptoms. She also had Mono several years ago and has since had a few bouts of severe chronic fatigue type symptoms. She even had a blood test during one of these times which indicated she had just had Mono within the past 2 months, yet it had been 2 years previous. The Dr. said that indictated some sort of reactivation of it. He even thought it's possible she has an autoimmune disease not yet diagnosed at her young age.
She began later having other symptoms like swollen hands. They didn't always look obviously swollen but she said it was hard to bend them. Sometimes after the puffiness is gone, she experiences joint pain in her hands. She says it feels like the joints are "sticky" sometimes. She has these tiny They just come and go.
She was tested again later for things. Again the tests for lupus, arthritis and allergies came out negative. She sometimes tests positive for the C4 protein I think? Which indicates possible autoimmune disease (which many forms of run through our family). She was further tested for the C1, which indicates a handful of specific diseases. The Dr. was thinking the symptoms pointed to angioedema. She tested positive for the C1 portion, but not with further testing so he ruled that out and told us he didn't know what it was. Other times her C1 tests are in normal range.
She has also had her thryoid tested and was found to be slighly low, but having meds to improve it didn't change her pattern of symptoms. She also had Mono several years ago and has since had a few bouts of severe chronic fatigue type symptoms. She even had a blood test during one of these times which indicated she had just had Mono within the past 2 months, yet it had been 2 years previous. The Dr. said that indictated some sort of reactivation of it. He even thought it's possible she has an autoimmune disease not yet diagnosed at her young age.
Thanks for the comments! This is all very tricky. She is seeing a Dr. next week and hopefully he'll be willing to recheck many of the things tested in the past... especially since she's in a flare of whatever this is. Maybe something will show this time.
We've considered CFS and she has many of those symptoms. The CDC however, says in order to be dx with that, you need to have severe chronic fatigue lasting 6 mo or more.... I assume this means 6mo of constant fatigue. She suffers these periods of fatigue and other symtpoms sometimes together, and sometimes seperately. But never for 6 mo straight. A month or two is probably her longeset before things start to improve. Another possiblity we thought of was EBV syndrome.... but generally sore throats are chronic with that and she rarely gets a sore throat of any kind.
She has many symptoms of different things.... but not always enough to be conclusive. We may just try dietary and lifestyle modifications that will help in general with immune issues, inflammation, etc... and see if that helps some.
She's also battling with depression that not surprisingly coincides with the other symptoms much of the time. It seems to leave when the worst of the symptoms do. This whole thing is tough on her mentally and emotionally as well as physically.
We've considered CFS and she has many of those symptoms. The CDC however, says in order to be dx with that, you need to have severe chronic fatigue lasting 6 mo or more.... I assume this means 6mo of constant fatigue. She suffers these periods of fatigue and other symtpoms sometimes together, and sometimes seperately. But never for 6 mo straight. A month or two is probably her longeset before things start to improve. Another possiblity we thought of was EBV syndrome.... but generally sore throats are chronic with that and she rarely gets a sore throat of any kind.
She has many symptoms of different things.... but not always enough to be conclusive. We may just try dietary and lifestyle modifications that will help in general with immune issues, inflammation, etc... and see if that helps some.
She's also battling with depression that not surprisingly coincides with the other symptoms much of the time. It seems to leave when the worst of the symptoms do. This whole thing is tough on her mentally and emotionally as well as physically.
Make sure she is not pos. for lyme,next mono is Epstien Bar Virus titers high when infection like strep or sinus or virus.It took me 6 yrs to get my son better.C1 C1esterase very hard blood work next time she has hives or feels stiff Drs should take blood send it to Mayo Clinic Water should never be so hot or cold.This is a long process her body will get better.Mayo Clinic said sleep sunlight excersise treat pain if nec. My son was not even 100 pounds at 12 yrs old Blood work diferent every month, they need rest and positive things in there life,music painting photoghaphy and I am sure her Dr will write notes for school.That is the most stressful part for my kids.My daughter very fair red dots and hives all the time she is positive for hlab27 gene for spondalitis of spine My daughter got fed up with Drs very complicated for all invovled
A related discussion, My 13 year old son has strange symptoms and doctors can't diagnosis him was started.
Wow, I am experiencing a lot of the same symptoms, mostly Joint Pain and Fatigue. It is off and on. I have had hives too on my legs. I used to think I kept getting bit my misquitos all over my legs at night.. but then my husband told me they were hives, because he was awake and there were not any misquitos in our room.
One thing I discovered is that everytime I went to the urgent care center, when the joint pain got unbearable, I would have a low grade fever. I assumed somthing was " Flaring" . But any time I went to the regular doctor appointment when I was feeling " Okay" I did not have one. I was tested for all the same things you listed above, and all results came back negetive. I am going to try and get tested again when I am " Flaring" and see if they find somthing.
I am 23, and am feeling like I am crazy. I hope you find a solution for your daughter, because going through this is awful.
Please keep me posted with how things work out.
One thing I discovered is that everytime I went to the urgent care center, when the joint pain got unbearable, I would have a low grade fever. I assumed somthing was " Flaring" . But any time I went to the regular doctor appointment when I was feeling " Okay" I did not have one. I was tested for all the same things you listed above, and all results came back negetive. I am going to try and get tested again when I am " Flaring" and see if they find somthing.
I am 23, and am feeling like I am crazy. I hope you find a solution for your daughter, because going through this is awful.
Please keep me posted with how things work out.
MEDICAL PROFESSIONAL
Although the water effect is unusual the other symptoms are consistent with CFS. Often CFS patients who have chronic infections have skin problems, such as sunburn feeling, tingling or crawling feeling, rashes, blemishes, and other problems. This occurs when the pathogen(s) invade the skin and in particular the peripheral nerves and cause dysfunction. The fact that she has had infections and still shows some evidence of infection is consistent with this possibility.
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