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Discussion Starter #1
These are just rambling comments for myself to give to the rheum I'm seeing... when I set up the appointment. In typical new member fashion, I'm curious to know if anyone sees some of themselves in this. two doctors now have mentioned lupus and they're cutting off my flexeril (see below) to make me get bloodwork done and see a rheum. Anyways, hope you can make sense of it:


birth:
seizures, bad reaction to vaccination (104ish fever, screaming all night long, etc.), unknown severe illness that finally went away on its own while waiting in the ER, cried excessively as a baby.

childhood:
minor fatigue, seizures, joint/muscle pain (growing pains-- but very frequent), homeschooled and led very sedentary life/got tired quickly despite desperately wanting to participate in activities. loose/unstable joints (still have them today), easily dislocated shoulders.

puberty:
period at age 10 (barely), no major symptoms besides minor fatigue and muscle/joint pain. Severe/chronic anemia blamed on being female and vegetarian.

15-16:
severe menstrual symptoms-- PMDD, heavy/unbearable pain, general (nonhormonal) psychiatric disturbances for no apparent reason (probably pretty common though!). Sprained right ankle, still continues to hurt, swell, etc.

17:
Vaccinations in the summer-- first set since the bad reaction as a baby. incredible fatigue, gained 50 lbs in around 6 months (30 before even moving away to college), completely crazy/psychotic, thought it was mono but test was negative. September-- severe chest pain and rapid heartbeat, thought it was anxiety, turned out to be-- something? pediatrician rx'ed no caffeine and NSAIDS to reduce inflammation of something or other, no more chest pains. worse seizures. incredible confusion, unable to do basic math or remember social norms.

18:
Another shot during the summer. ER visit september due to chest pain and rapid heart rate-- dr. dx'ed either pleuritis or pericarditis? Swelling of *something*, did not hurt to breathe in. Pain identical to chest pain at 17. diagnosed with FMS November, mild hypothryoidism according to AACE standards (not treated). Began using crutches-- walking too unbearable. Strangely other muscles less painful to work. Walking = joint + muscle pain combo that I can't tolerate.

19:
spring: "sprained" right elbow, still bothers me today. Began using wheelchair. symptoms seemed to improve on vegan diet, but only marginally. diagnosed with eczema on eyelids, has since spread to bridge of nose, right arm, left thigh, and over nose/cheeks.

summer-- scary neuro symptoms (uncontrollable violent jerking limbs, losing ability to speak). bleeding every 10-14 days. Neuro suspected MS or brain tumor(?) and ordered MRI... only cause found was very low ferritin levels. symptoms improved on high doses of iron.

fall/winter-- recurrent bouts of severe muscles weakness (lasting a few hours to days, had to wear diapers, etc.), sleeping 20-22 hours a day, failed math test because I fell asleep on it. fatigue and sleepiness improved with iron, weakness continued until around Christmas. Severe blood loss and pain on 9-10 pain scale with periods, improved with hormonal BC. Gyn exam + ultrasound found nothing. 1 psychotic episode during worst of the weakness. Began using walker. Noticed "sunburn" or "tanlines" on cheeks and nose despite never going out in the sun, just ignored and used more concealer (still there).

Emory doctors suspected hormonal problems, bleeding disorder (couldn't clot, still unsure why), told to go to rheumatologist by 2 doctors, considering possibility of lupus or other autoimmune problem. Thyroid panel revealed borderline high T4 levels but clinically low T3, suggesting conversion thingy and off-ratio something. Emory doctor suggested autoimmune thyroid condition, ref'ed to endocrinologist (haven't gone yet) and said no more flexeril, have to see a rheum for Rx. (I need it for periods and just in case.)

20:
COMPLETE DISAPPEARANCE OF ALL SYMPTOMS (a girl can dream!)
 

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Hi again Rachel

You have done well to list out your health history. Now the next step is to go and make that Rheumatology appointment!! ;)

There is no doubt in my mind that you are not a healthy individual. Something is decidedly wrong and its about time someone tried to join the dots and get you on some treatment that will make you feel better.

You have a range of symptoms involving a range of specialities and this can make things a bit complicated. However many people with Lupus will find themselves attending a number of various specialists. It wouldnt be unusual to be attending a Rheumatologist, a Neurologist, an Opthamologist, an Endocronologist, a Physio Therapist, a Gastrologist, Dermatologist, etc etc. (Im just listing the ones Ive been under over the last couple of years). However with Lupus its usually the Rheumatologist that will coordinate the care.

I noticed you mentioned you have loose/unstable joints. Here is a link to a sticky thread on the Paedatric Forum on Hypermobility which you might find useful.

http://www.thelupussite.com/forum/showthread.php?t=62012

There were a few other things that struck me as important including your bouts of inflammation related problems, e.g. pleuritis or pericarditis and your bouts of neuro symptoms which sound very worrying and must be very scary for you. Are you on any medication for the seizures by the way? Seizures can be caused by brain inflammation related to Lupus.

I see you also have a diagnosis of Fibromyalgia. About 30% of people with Lupus have this co-condition. Also your diagnosis of hypothyroidism could be significant here as well.

Get someone to take some pictures of your rashes for your appointment. These can be very helpful to your doctor especially if your rashes flare up and down and dont often oblige by being 'present' just when you need them most....

I know it must seem overwhelming to you but I really strongly urge you to set up those appointments with the Rheumy and Endo docs. There are treatments that can help you but its only by finding out exactly whats wrong will you be able to get the right treatment. You owe it to yourself to give yourself the best possible care.

It would be lovely to see your symptom list disappearing by the time you are 20 ;) but in all honesty that isnt going to happen until you grab this by the tail and deal with it head on. You sound like an upbeat, determined kind of person. Use this determination to get to the bottom of your health issues.

Do let us know how you are doing and if we can help in any way we will. You are far too young to be suffering from all of these problems. You have a life to live and you deserve answers and treatment.

Take good care
Joan:rose:
 

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Hi Rachel

Nice to meet you. On reading your post, two things struck me. Firstly you sound so positive for someone who has been through so much at such a young age. Secondly, what a fantastic symptom list, you are so well organised!!!

You definetely have something and I really hope that they can get to the bottom of it and start you on some proper treatment.

Wishing you all the best for your rheumy appt.

Deb
 

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Discussion Starter #4
thank you both! :)

re rashes: I'm not sure I actually have the rashes typically found in lupus, which is what makes me doubt having it. I have eczema, and right now it seems mostly managed with hydrocortisone gel and a minimal use of any kind of soap. is eczema auto-immune related, does anyone know? I know it can be allergy related...

I'm sort of seeing a neurologist (I would say I'm under his care) and I did see a cardiologist for my first bout of whatever-it-is with the chest.

no meds for the seizures... I wasn't allowed to listen to music during my EEG and therefore didn't have a seizure. :p I just realized I failed to mention they're only focal-- I stay awake during my seizures and they only last 5-10 seconds or so. They can be really intense though! According to my heart rate monitor (I use it for exercise) my heart rate spiked from 70 to 160 during one of my "episodes", then came down to 120 and stayed there for the rest of the seizure. Once it was over, it immediately dropped to 90 and slowly returned to 70. I know I can't fake that (the other symptoms are sensations of falling, intense terror, and violent tremors/loss of control in my hands/arms) and since I've had them since age 2 or younger I know they can't be somatoform. (Had a psych dx me with that because I was too impaired by my "fibro"... no duh, it's clearly not just fibro!)

And thanks so much for the link on hypermobility! I had no idea it was so prevalent in lupus.

Am I just a really weak and lazy individual for using a wheelchair/walker? It seems like most people with lupus and/or symptoms similar to mine just tough things out so much better than I do. I just can't enjoy myself or function as well without my walker or wheelchair, though... especially without any kind of real diagnosis and thus treatment. I feel very embarrassed by the fact that so many people with cancer and serious illnesses don't even use a walker while I refuse to leave the dorm most days without mine. :worried:

I think there's something I forgot to mention but I'm late for the chiropractor, eek! :)
 

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Hello Rachel,
Some aspects, like the violent reaction to immunisations I can identify with myself. Like you I was never a healthy child.
My Daughter who has Lupus and other things also had to be home schooled and also has things in common with you.

You DO need a Rheumatoloigst!

Welcome Here and Good Luck!
x Lola
 

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Discussion Starter #6
thanks lola! I definitely plan on making that appointment soon. I don't know if I should include that my hair falls out more than it grows back in... that's probably a dietary or hypothyroid thing, I assume. I have rather thick hair (or, I HAD it...) so you wouldn't think "oh, her hair is falling out" to look at me... but it's definitely a lot thinner/more managable now. Not complaining about that, I just wish it would grow like at all :(
 

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Hi Rachel

Yes do mention about your hair thinning. It can be a feature of Lupus particular when one is flaring. Its important to let the Rheumatologist know. If there are any other 'symptoms' you are wondering about, dont be afraid to ask us. There is a wealth of Lupus experiences here on this board ;)

Cheers
Joan:rose:
 

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Discussion Starter #8
lol, the problem is I'm so foggy most of the time I forget about things! I only remembered that my hair is falling out because when I was at the mall today this lady at a kiosk wanted to straighten my hair and it reminded me that I stopped using my straightening iron because my hair was thinning so much. But even though I haven't straightened my hair before today in at least two months it's still thinning out and shedding a lot. ah well.
 

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Hi Rachel,

Welcome to the forum.

I suggest you also mention your foggy brain. It is the combination of all of your symptoms that will help the doctors in giving you a diagnosis.

Take care,
Lazylegs
 

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Discussion Starter #10
thanks! I just added it to my list. I really appreciate all the help you guys (well, gals, it seems!) have given me. :) It means an incredible lot to me.
 

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I am new to this forum, and I am just trying to grasp the fact that I might have Lupus. It started with a DVT of my right transverse sinus 4 months ago, It came out of nowhere and b/c of that brought on all the extra testing. Which included a +ana of 1:640, which complicates matters b/c of the very strong family hx of ra and scleroderma i also have. I have no arthritis, no joint pain, no fatigue, no sensitivity to sun except i do burn very easily if that counts, normal b/p. The only thing i ahve noticed is the malar rash i have read about however i only see that after a glass of wine or with extreme stress. I have to wait 3 wks to find out what the rest of my blood test show, however i am very nervous in the mean time. i appreciate all the postings i have see, they have been a great help in finding out more about this!!
 

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Thanks Rachel

Rachel thanks so much for the list you made i have a appt with a rhem. in march for the first time and i hope you dont mind but i used your lay-out to put imy stuff in order I had a 3 biopsy done on my face in november 2008 and and 2 of the places showed changes seen in Lupus Erythematosus is raised I have been having problems for so many years my gp thought i had lupus 5 years ago but she done a ana and it was normal i have been diag. with fibro. osteo and raynods . i have such a problem with the itching and the brusing the itching started 2 years ago and the brusing about 5 years ago don;t do anything just sitting and fill it pop under my skin and then there is the bruise
my facial rash only happens when i am in the sun or tired so thanks again :)
 
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