The Lupus Forum banner

1 - 14 of 14 Posts

·
Registered
Joined
·
14 Posts
Discussion Starter #1
I'm not sure whether this is the right sub-forum to post this topic, because I haven't been diagnosed yet. I'd just like to have a list for myself to have everything together, in case I forget to mention something to a doctor. I am not sure what could and what could not indicate lupus (I could use google, but according to the search results on any medical symptom, everyone would be dying), maybe some of you could help me with that? (forgive my prepositions, I suck at phrasal verbs)

I'll start from the beginning.
Prenatal:
- My dad has a thyroid problem and got radioactive treatment for that, half a year beofre I was born. He was told to keep distance of me for a while, but our house isn't bit enough for that. Could this be a cause?
Birth:
- born with a red rash on my forehead and scalp.
- little white skin flakes behind my ears since my birth.
- Diaper Rash.
Age 1-6:
- continuous infections of my tonsils, spreading to my ears. They didn't remove my tonsils yet, because the GP thought it would get better if I got older (but it didn't).
- mouth ulcers about all the time.
Age 7-8:
- suffered about half a year from Pertussis.
Age 10:
- Skin discoloration started. Mainly if it was cold, but it would also happen during the summer. My hands turned (dark)blue with orange spots, and if I changed temperature they got very itchy and burning, swelling -> Raynaud's.
- Poor blood circulation in my hands and toes, causing them to be cold 95% of the time.
Age 12: I fell with my head on a nail, causing a cracked skull and bleeding for hours. I am not sure if it's a blood clotting problem, but stitches didn't work very well and after a layer of glue, it still bled for 2 hours or so.
Age 15-16: This is where the more serious symptoms appeared. In April 2007 I got another
- heavy tonsil infection. I was treated with different antibiotics, but I got allergic to both of them (and all other antibiotics since). So my tonsils had to be removed.
- Fatigue. Starting at the same time as the tonsil infection, it lasted after the surgery.
- Lost of appetite.
- cardiac arrhythmia, both tachycardias (more often at first) and bradycardias (more often now).
- hearth murmur
- constipation. After the tonsil removal I didn't use the bathroom for #2 for 11 weeks (!). I use lots of laxatives now, to keep it coming a bit. The constipation came together with severe abdominal pain and bowel complications, so I was hospitalized for that (October 2007). They made an echo revealing an
- enlarged liver, and further physical examination showed
- enlarged lymph nodes,
- swollen glands
- diabetic symptoms, thirst, shivering if I don't eat in time
- raised calcium in my blood,
- different IgA and IgE values (and some others I don't remember, they didn't test ANA) and
- protein in my urine. Every morning I had (still have) a
- fever of >38°C.
They never did anything with these results, instead the doctors sent me to a psychologist because they thought there was nothing wrong with me and I had fear of using the bathroom (yeah, right. I still blame them for that).
After I was discharged (December 2007), more symptoms appeared:
- fear, unexplained anger
- weakness, at one point I couldn't stand on my legs anymore (around Christmas '07)
- concentration problems (trouble thinking, memory problems)
- food allergies, antibiotic allergies:
-----hallucinations/ vision problems
-----memory problems
-----personality changes
-----shock
- hair loss (hands-full of hair every day, in a few weeks I lost half of my once very thick hair)
- chest pain, comes and goes but if it is there, I can't breath deep because it hurts too much.
- retaining fluid in arms, ankles and around spine. Sometimes all over my body
- nagging pain in my shoulders, back, legs
- white stuff on tongue
- lessened sense of taste

Age 17:
- plummer's nails. A few months earlier my thumb nail got loose, but around spring '08 nearly all (finger)nails disconnected from my nail-beds, and got infected by a yellowish discoloration. Again, allergic for the antibiotics.
- numbness in my fingers. Triggered by cold, but also occurs inside the house. (peripheral neuropathies)
- loss of temperature-sensation. I can put my hands in the oven without feeling a thing.
- fingertip scarring. I have questioned myself many times where all the scars in my fingers come from, but I never managed to find a reason.
- menstrual irregularities. I have stopped taking the birth control pill begin of summer '08, period only occurred twice since then. I started in April 2007, at the time most of my symptoms showed up.

Now, still aged 17, I am still tired and boring to hang out with, because no matter how I try to be the clown I used to be, I just can't put myself to it most of the time.

Other things I can't connect to a specific age, but have been there as long as I can remember: Butterfly rash, sun sensitivity (sun rash), headaches, migraine, blue vain-like lines under my eyes, chronic anemia, low blood pressure, big thickened plates on my skin after mosquito bites, many infections and bad immune system. My skin is very sensitive and I get sunburned very easily. Also I get bruises after tiny knocks.

Another medical problem that I don't think is connected to lupus, but might be interesting to mention: I shrunk over 10 cm in a year and a half. My spine density was measured with an x-ray, but that didn't reveal anything special, so it was thrown to osteoporosis.

Also I have acne, and although I'm still young it got worse during the years, and as I am almost 18 I thought it should be getting less. Anyway, this could also just be puberty.

I can't think of anything else right now, but I'm sure I am missing some things. Especially the smaller things, and things I experienced earlier in my life.

Thanks for reading. :)
 

·
Registered
Joined
·
70 Posts
I still have acne too, and I'm 20!!! I also lost an inch or so, apparently.

We're very complex cases... I don't know what caused it, but maybe some day we'll magically hit on the right thing. :)
 

·
Administrator
Joined
·
10,179 Posts
Hi Werewolf,

I moved your post since you have not been diagnosed yet.

Getting a diagnosis can be difficult. It can take years since many diseases share the similar symptoms. In your case I think investigation is definitely warranted, if even to rule out Lupus. You should have your ANA tested. The following site includes the blood tests used to both diagnose and monitor Lupus.

http://www.uklupus.co.uk/tests.html

Good luck with your appointment. Let us know how it goes.

Take care,
Lazylegs
 

·
Registered
Joined
·
2,404 Posts
Dear Werewolf,
There are a number of things on your list which could be very significant. (You have done well with it)

A number of things are familiar to me especially the tonsils, mouth ulcers and extreme reaction to insect bites.

Just one thing ( and I may be totally wrong) is there any chance you have hypermobile joints? Not that it would explain all your symptoms, but the fact that stitches did not work for you could indicate a collagen disorder such as hypermobility or Ehlers Danlos syndrome. It would be useful for you to know if this is the case.
x Lola

I do not mean to give you medical advice, I am basing this on my own experience. Hope it helps.
 

·
Registered
Joined
·
15,684 Posts
Hi Werewolf,

You have done very well with your list :) As mentioned it can take time to sort out things with such a comprehensive medical history. They have tested your thyroid for levels and also run a thyroid antibody test haven't they? With your father's problems and quite a few of your symptoms that would be one thing I would want to rule out.

Good luck and let us know how you get along.

love
Lily
 

·
Registered
Joined
·
14 Posts
Discussion Starter #6
Thanks for all the replies so far (I couldn't respond sooner, I had trouble reaching the forum. Has it been offline a lot or was it just my connection?)

I am waiting for the results of my blood tests, I'm pretty sure they also tested for ANA. But are those results definite? I guess I will hear that from my rheumy next thursday ;)

My thyroid levels have been tested indeed, but now they are tested again because I was on drugs that might have affected them.

Hypermobile joints, I had never heard of it but I don't think it is the case.

I'll keep you informed about my appointment next Thursday

Good luck everyone!
 

·
Registered
Joined
·
15,684 Posts
Hi,

Good luck with your appointment on Thursday :)

The forum has been running ok, maybe you had a problem with your end?

A positive ANA does not mean you have Lupus, but it's one of the first screening tests they do.

love
Lily
 

·
Registered
Joined
·
14 Posts
Discussion Starter #8
Thanks :)

I think it was just my pc then, but I got a time-out error every time. Today the forum works fine. Hopefully it will stay that way. :)

They took 36 sticks of blood, so I have been tested for lots of other things too. Also other auto-immune diseases I believe. Does a negative ANA mean it isn't Lupus? I read somewhere a few percent has a negative ANA, but I don't remember where I read it and how reliable the site was.
 

·
Administrator
Joined
·
10,179 Posts
You can have Lupus and have a negative ANA, but the likelihood is much less. The doctor would be diagnosing by the other criteria met.

There are some members on the site with a negative ANA. Maybe someone will come along and post.

Take care,
Lazylegs
 

·
Registered
Joined
·
14,661 Posts
Hello Werewolf

If the ANA is negative there has to be a compelling weight of other evidence to get a lupus diagnosis and often other causes of the symptoms have to be excluded. I'd say it was very unusual indeed to have absolutely no abnormal bloodwork of any sort and get diagnosed. Diagnosis should be more clinical than based on blood work which some doctors consider to be mainly confirmation of the clinical signs, or of course showing ' hidden' problems

Of course biopsy of skin and kidney are often important.

Good Luck
Clare
 

·
Registered
Joined
·
14 Posts
Discussion Starter #11
Last Thursday I had my appointment at the rheumy and dermatologist. My blood came back negative, but as they both are sure it must be lupus, they will keep testing my blood untill it comes back positive. I'm not sure wether I should be happy or not.
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
Werewolf,
It seems that you have had a very hard time in your short life. I would ask if you only see a general doctor for all of this? You need to see a dermy and a rhuemy. Those are the 2 that come to mind but I am sure that these 2 doctors will advice you if others are needed. We have a chat room and I do hope you will use it. I hope you feel better soon.
 

·
florie
Joined
·
589 Posts
werewolf,

Has anyone ever mentioned an infectionus disease doctor??

I hope you get some answers and help. You have been through alot.

Florie
 

·
Registered
Joined
·
4,968 Posts
Hi Werewolf and nice to meet you. Your the same age as my son. He will be 18 in 2 months and will graduate high school in june.

I am sorry you have such a hard time being so young but your list is impressive. I would tell you to keep a daily journel and take pictures of any rashes that may pop up in the future.

As for being happy or not about negative blood work, well all anyone wants is answers and when the bloods do not show anything then the answer becomes difficult. I can understand dissappointment with negative bloods because you still sit and wonder.

I can tell you my bloods were negative for a long time and then BAM, a lot of positives and a clear picture was painted.

Keep your chin up and best of lucking moving towards a diagnosis so you can get treated and feeling better soon.

By the way, are you a senior in high school too?
 
1 - 14 of 14 Posts
Top