[GammaRae]

Yes, I'm only seventeen. Barely seventeen actually my birthday was just last month.
In the past two years I have been anemic. I have had kidney problems too, nothing severe though, I have had calcium in my urine and have had kidney stones. I have had numerous infections, UTI's, staph infections, etc. I feel like every scrape I get becomes infected too. I have had ovarian cysts. I'm diagnosed with migraines and take a Rx for that. The migraines have caused me to pass out on several occasions. I feel tired constantly. I sleep all of the time. I am diagnosed with having eczema but recently my rashes have been looking different and they feel warm. I had a seizure like episode. I became stiff and collapsed. I'm embarassed to say this but when it happened I wet myself. I didn't go to the ER that day. No one was home when it happened and my mother related it to my migraines and me being sick. My legs are also always very sore. I get random pains.
The other day I was seeing an allergist. I've gone to the ER a few times lately because my throat has closed up to the point I couldn't breathe. It was treated as an allergic reaction. I didn't swell up though which is typical with anaphylactic shock. He was mentioning lots of possible causes. He mentioned vocal chord dysfunction. That was his main suspicion. He also mentioned that people with autoimmue diseases such as lupus sometimes produce excess histamine which can make them have allergic reactions basically to themselves but he said he doesn't think that's me. I have to wonder though. Ever since he mentioned lupus and I've looked it up, I find myself fitting a lot of the symptoms.
I recognize that it's very probable I don't have lupus. I was just curious as to opinions. I think I've been losing hair but not a signifigant amount. I haven't lost weight. My white blood cells are normal. Unrelated to this I am homebound for school. I do school at home because I have aspergers syndrome and I have really bad anxiety attacks. I don't know how much if any of this anxiety can cause. I have heard of anxiety causing psychosomatic pains and tiredness and even making eczema worse. I just feel like it's something more though.
I've been doing lots of tests lately today I actually am doing a 24 hour urine thing. I have to collect every time I go to the bathroom all day. I'm not sure exactly what this is for they said something about checking it with acid? I also had like 10 vials of blood drawn yesterda. Maybe something will be found...

 

[Katharine]

Hello GammaRae and welcome

It sounds as if you are already being well followed up by your doctors and that is good. Having seizures (even if the cause is determined to be your migraines) has to be taken seriously. I presume that you have mentioned this to the doctor (including the embarassing bit)?

Lupus is an extremely complex disease which can affect people in so many different ways so it is difficult to say if your symptoms match. Certainly some of our members share some of those symptoms. Do you have other "typical symptoms" such as joint pain, fatigue...? You can have a look at the diagnostic criteria here in the "not yet diagnosed" section. It could also be a number of other things, some of them autoimmune, some not.

Your age does not exclude you from having lupus, nor does the lack of a low wbc. We have quite a few young members who come here. They do post a little less but hopefully you'll here from them too.

If your doctors think that something autoimmune is going on they may refer you to a specialist (usually a rheumatologist) for further investigation.

hope that helps a little,
Katharine

 

[Zoi]

Hi there and :welcome: to the forum!

I'm really sorry about what brings you here though....

My name is Zoi and I'm 23 years old. I was diagnosed with lupus and aps when I was 21. However I, like you, had problems with eczema, mysterious allergies, fatigue, infections, trouble breathing, the works since I was about 17.

I'd get really bad eczema on my arms or I'd have to go to a&e to get steroids because of an allergy to god knows what (I've tested negative to all allergens except a particular antibiotic) and I'd think all my troubles had reached a low point this time and it would stop. But it didn't; it continued and got worse. Then I started getting really bad headaches almost all the time; I'd stay up at night for days at a time sometimes cause the pain was so bad, I was incredibly irritable and short-tempered and unbelievably tired 24/7. I thought everything was psychosomatic too. No, scratch that actually. Looking back now I realize that I hoped everything was psychosomatic as I thought that if was I would just have to go to a psychiatrist, do psychotherapy and be ok and I thought that was better than any other alternative... I did go to a psychiatrist and he told me to get blood tests and MRIs as he was sure something physical was behind all my symptoms, even my headaches. And he was right.

The headaches kind of went away on within a year or so, the eczema didn't and the allergies persisted too. That is until I was diagnosed with lupus and aps. See the treatment for lupus and aps has gotten my eczema and allergies under control and I've not had a headache for no reason in years. I've heard the excess histamine theory before and I too was told I probably had vocal cord dysfunction when I went into hospital with a really bad allergic reaction. They told me my vocal cords probably contracted and closed my windpipe and that's why I couldn't breathe and that the steroids probably relaxed the cords and they in turn allowed my windpipe to open again. I don't know if that's true or not, from what I understood in order for that to be proven one would have to have an ENT check one's vocal cords with a tube during an episode and that's both impractical and not something I wanted to go through personally...

17 is a very young age to have anything wrong with you, I agree. Lupus or no lupus it is incredibly unfair to be ill at 17.... Nonetheless, the good thing about being in a rough shape from a disease is that there's usually only one way to go from there and that is up.

I think you would benefit from going to your internist or your GP and talking to him about what is going on with you some more. You definitely need to mention that you had a seizure and you probably need to get a referral to a neurologist so you can get an eeg done, check why you had a seizure and whether or not you need to be on anticonvulsants.

Re the wetting yourself bit; I too was incredibly embarassed when I had my first seizure. I wet myself, my clothes, my bed and I couldn't look people in the eye for days after... I've had plenty of seizures since, some of them in hospital, some at home and I've come to realize wetting yourself is just something that happens sometimes with seizures (like biting your tongue) and it's really nothing to be ashamed of...

When you see your GP or internist it might be good to learn whether or not an ANA test was included in those 10 vials of blood they drew; if not then you might want to ask for an ANA test to be done as well as discuss with your GP the possibility of you having an autoimmune disease. Do inform your GP of your allergist's opinion that something autoimmune might be behind your troubles.

Re your pains and soreness, have you told your doc about it? Are you on any meds for it?

Ah! Also are the migraine meds you are on controlling your migraines or are you still having them frequently?

I wish you the best of luck with getting to the bottom of what is going on!

Hang in there! Things will get better for you!

:flowery:

Zoi

 

[GammaRae]

Thanks for the replies and advice Yes, there is definitely a lot of fatigue. I used the words "tired all the time" but that's what I meant. As for joint pain, I definitely have pain in my knees. Other than that, not so much but some in my wrists. I'm not on any pain meds except migraine stuff. The medicine I take for them isn't preventative so I still get them a lot. It is however very effective at stopping them. I do feel better after taking it relatively quickly.

 

[kcmmem]

response

My husband who is 6'2'' and about 180lbs passed out in a class several months ago. He also wet himself. Although they are not sure exactly what caused this episode, the did find that he was extremely anemic (good rbc cound but his rbc's were extremly deficiant of Ferritin an iron carrying part of the cel) and that he has an arrythmia that could have been exhaserbated by his medication that he takes for RLS. Now he has to take medication to keep his blood pressure really low so it doesnt drop low enough to make him pass out again (a vaso vagal response where your bp raises and lowers quickly making some people pass out. Sounds strange to lower his bp but it has worked) So as you can see, many things can cause you to pass out and you need to let your dr know all that you are experiencing.

 

[LolaLola]

Dear Gamma Rae,
The road to diagnosis can be long. Certainly there is something going wrong for you. I have Lupus and APS (sticky blood), so does my Daughter, she is 17 like you. The fatigue is awful. An enlightened Consultant will treat your symptoms, even if the bloods are slow to show anything.
Are your Parents supportive, they must be very worried. If they want to come here too they will be welcome.
xxxx Lola

 

[tutublue]

Very sorry to hear of all your symptoms Gamma. I really do hope the doctors find out what you have soon so that you can be put on the right path.

I'm 31 now but was dx with lupus at 17 and quite possibly had symptoms before that. My illness also started with anaemia, joint pains, fatigue and numerous "faints" and infections. All of which were put down to growing pains at 1st. That's not to say that you have lupus as many things could be the reasons for your ills.

I do hope though that you find an answer soon as this in it self is the 1st step in treatment.

Take care, tutu xx