What do you think? - Lupus Message Board

-T- · 10-03-2004, 06:09 PM

Hi everyone. Hope your all well.

I'm pretty glad I came across this board as I have been experiencing some pretty weird symptoms over the past year or so and after reading the stickies I am kinda concerned but by no means am I going to diagnose myself and get it into my head I have Lupus when it could be something pretty minor.

Anyway, I'll stop rambling now and tell you my list of weird symptoms. I feel like an OAP at times! (Im going to go back over a period of 3 years here but most of these symptoms are still very much present)

My Symptoms:

I have dizzyness pretty much anytime. It comes and goes when it feels like but happens everyday/night. I also have brain fog at times where I feel as if Im seperated from the things that are going on around me and my concentration is pretty lacking when this happens and my reactions. (I become "slow" when I have this).
I also keep having joint pain. I broke my wrist 5 times (as soon as one healed it was broken again) I didn't even fall over and it was broke. Told the doc this and I must of fell over according to him. I also broke my lower rib which stuck into my lower back...somehow..and I didn't fall over when I did this easier. Just woke up one morning and couldn't lift my left leg, I was in complete agony and couldn't put my back up straight. Its fine now thank god.

The pain I have can be in my neck and upper back, sometimes across the middle or lower back as well. I also get pain in my abdomen (been pretty painful this week but eased off now so Im not worried). I have weird muscle spasms when I can feel in my thigh throbbing in one place and can see it but it doesnt happen that often and my periods have gone mad. I keep missing them or have an extra one. (Now it just seems to be missing them mostly).
I have this weird thing where my legs, feet or hands go numb. If its my legs and feet they go so numb they go a purplish colour or sometimes I have like this red burn on the top of them while there numb.When there "coming back" it hurts like mad. So bad I feel like I could cry. The pain hurts a lot.
Im very pale. I used to have a pretty good tan when I was 13 and after this decent skin tone but now I've gone very pale and been referred to as a walking corpse by a friend of mine. Charming huh? Lol. Im always very exhausted. I can go to town and come back and sleep over 18hours then wake up still tired. I never do feel to great in myself. Some days....very few...I feel in the best of health then suddenly just poorly. Its hard to explain how I feel. I guess it could be called malaise. But I dont know.

I've also had the odd nose-bleeds. I never have a nose bleed. I woke up with one the other day. Just wiped my nose and it was gushing out. It stopped after 15mins so I put it down to banging my nose in my sleep...somehow

And sometimes, when Im in the bath I notice this burn patches of rash on my chest (above my breasts) which go after 30-60mins and I keep getting hot flushes and sometimes spots in front of my eyes or general tenderness all over.

And the last thing I can think of: I keep picking up colds, flu, sore throats and I have loads of mouth ulcers. I've got 5 now! I had one just over 8 days ago and as soon as them 2 cleared up some more little devils pop up. I can go a couple of days without a mouth ulcer...sometimes a whole week but then one pops up followed by one or two more. Argh I hate mouth ulcers.

I have been diagnosed with:

Asthma
Glandular Fever

I've had blood tests which confirmed Glandular Fever and when I told the doc I felt awful...way before I was diagnosed I got told I couldn't feel this bad.

I also had a blood test which came back normal for anemia.

Thats everything I think. Im only 18 so this is pretty annoying and I start to think its all in my head until I feel my throat and notice my lymph nodes are still swollen there and in my groin and my temp keeps going up and down. Tis nuts, lol and I have chest pain pretty bad. I seriously doubt this is all related to Glandular Fever so would be grateful for any advice.

P.S My doctor doesn't listen so I've quit going to. Just figured I'll put up with it all.

Forgot to add: I've fainted twice and I've been getting pretty bad miagraines. The last one lasted for 12days straight and my blood pressure was very high (its normal now) and I had a high temp (still slightly high now). Seemed to of eased off now. Yipee!

Sampy123 · 10-03-2004, 07:31 PM

Most of your symptoms do not sound like lupus. However, the mouth ulcers and low grade fever could be something. If you're not getting anywhere with your doctor, you should go to someone else. That being said, when I read your post about feeling separated from things, that caught my attention. When I read the rest of your post where you fainted twice, that concerned me. I think you should see a neurologist. These are signs of a seizure disorder. I know, I have seizures. It could also be hypoglycemia (low blood sugar). These are the things that I would check out first. Just to be sure, if you want to rule out lupus, ask your dr. to run some bloodwork. Hope this helps.
Shari

VeeJ · 10-03-2004, 07:52 PM

Dear -T-,

In your shoes, I'd want a thorough physical, including, for starters, full bloodwork---incl. vrs. autoimmunes & also antiphospholipid syndrome. And a good dr. would probably consider things other than lupus, too---think broadly and not rule out anything too quickly.

When you describe your legs going purple & numb, it sounds like something is really affecting your circulation. Were you able to show any of this to your dr., or to describe it and get a sense that he'd comprehended?

Did you get copies of your bloodwork? I'd want to see them, to see what test had been run and to see the results myself.

I'm not sure what your dr. means by "glandular fever", and what test might prove that you have it. It sounds almost like an old-fashioned term...

Drs. used to see things in adolescence and call them relatively meaningless names like "glandular fever" and "growing pains". One rheumatologist in particular, a famous English specialist named Dr. Hughes, has written about such odd things---that he sees a lot of such things in people who go on later to develop some diagnosable autoimmune problem. And, for sure, you already have one (asthma).

I had odd happenings adolescence, too. They called the pain "shin splints", the crazy & wacko periods "immature ovulation", and yes, the dreaded "glandular fever", too. I never DID figure out what that meant.

Do you have access to OTHER doctors?

Can someone go along with you---to old or new dr.---to lend moral support and help make sure that the dr. treats you with the respect that you deserve? And gives you explanations that satisfy at least TWO thinking adults?

I hope you can get a "buddy system" together quickly, so you have someone dogging the drs. with you. And I do think you should persist. Just the headaches alone you describe sound like enough to flatten a person.

Please let us know how you are making out with a new game plan! I wish I could help you a whole lot more, but I really encorage you to try again and to persist. I send you my best wishes. from Vee

-T- · 10-03-2004, 08:35 PM

Hey guys,

Phew Im glad they dont sound like Lupus. I hope its just something silly and easily sorted out.

Erm Glandular Fever over here (Im in the UK) is actually Mono caused by the EBV virus in the states.

To be honest I dont think my doctor is considering anything. All they do is give me painkillers and say bye, lol. They are pretty useless and Im definitely thinking of changing doctors. I've had the FBC, U&E's done which came back normal. I seriously think my doctors believe its all in my head. Sometimes I feel like banging theirs.

The weird thing was, when I had the 12day headache, on the first day I had this sharp pain which went all down one side of my body (left) and my speech became very slurred then it went after 30mins or so. Told doc this and all I got was a "uh huh". Lol pretty useless. Think I'll give them a piece of my mind.

I did show the purplish colour to one doctor but it wasn't as wide spread by this time, and all he said was lots of teenagers experience pins and needles. I was like, im not having pins and needles Im having numbness and pain but she wouldn't listen. Tried the other doctor in the surgery and I got exactly the same response. *rolls eyes*
Nope, I haven't seen my blood work. All they do is the regular FBC and U&E's which tests your iron, protein, liver and clotting factors (I think).

What kind of test would I need to ask for, for an immune system one? I just dont understand why I keep picking every bug going up. Im getting the flu about 3/4 times a year and my cold I've had on and off.....probably went about one week, maybe two without it......for about 3 years now. Flares up and dies down to sniffles but I always need tissues. Told doctor this to and he didn't think anything of it.

I think I could drag my dad along with me and I'll definitely try. But I dont know about the explanations...I never get one, lol.

I did try telling the doctor about my chest pains to and my fast beating heart. Got to the doctors and it was beating very fast. She listened to it for about 10minutes without it slowing down and said I was hyperventilating. Pretty weird thing to say since I never have anxiety and I was standing there as calm as a cucumber. I think I'll see my doctor one more time. If their no use Im changing.

Thank you and you've been a great help. Both of you have.

I'll keep you posted when I get that appointment and everything sorted out.

Take care of yourself.

patience 50 · 10-04-2004, 06:44 AM

Hello -T-,

VeeJ's advice is the best I can think of. Go back to your Dr. or find a new one but go, go , go. The tests you want to ask for is a full immune system panel. If it is like here in the USA, the panel will show if you immune system is attacking your body by showing antibodies for certain things, or it will show impaired system by showing low levels of certain chemicals, vitamins, minerals, and like that.

I have only recently been Dxed with lupus and mine is still in the early stages. While I have had some really strange things happen, I haven't come even close to the full spectrum of symptoms some here have had.

I must ask if you have Lyme disease in the UK. It is a nasty thing you get from a deer tick bite. I was tested for Lyme too. All of the symptoms you just described were on the sheet of things to look for that my Dr. gave me. You can have lyme for many years, dormant, then all of a sudden your body and basically your life cave in on you. This disease can cause neurological problems, siesures, circulatory problems, halucinations, early menopause, early onset osteoprosous, and the list goes on and on. This can be deadly. Go to Dr. again NOW. Don't wait.

I know I'm shouting and lecturing but if you were my child I would be hauling you to any medical facility available and shouting and screaming until someone helped you. By the way, even though we are all grown up at 18, we are not to old to have Mom in our corner.

Also, by all means take someone with you. Preferable someone who has seen some of this stuff. My Dr. took me much more seriously when I gave her a list of names, address, and phone numbers of people who had witnessed my strange symptoms. They can't just blow you off when others have seen it too. There truly is power in numbers.

Let us know how you make out. Don't quit. There is certainly something going on here and you need to find out what. If I feel I am too young to suffer with unexplained problems, you certainly are too young.

May God Bless and Keep You
Patience 50