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bodypain 03-29-2005 12:56 PM

Concerned/Confused/Not sure where to go.
Hi everyone!

When I was a freshman in high school, my mother decided to put me on accutane to rid my face of a somewhat bad case of acne. One year after taking accutane I developed partial/complex epilepsy. Five different medications, and 4 months later, my neurologist finally found a drug (Dilantin) that stopped my seizures. Unlike grand mall seizures, where a loss of consciousness generally occurs, the left side of my body would shake. Legs, arms, etc. and my mental state would change... most of the time I could not hold back the urge to laugh. I remember random outburst of laughter in class, it was horrifying. I felt disconnected and confused during the seizures.
Before the neurologist tried Dilantin I recall him saying, "If this doesnít work, we will try anxiety medications next." Meanwhile, 3 weeks after being prescribed Dilantin, my GP prescribed paxil for anxiety. I was then seizure free.... 1 year later however, being the stubborn person I am, I gradually stopped the epilepsy meds without talking to my neurologist. If the anxiety meds were controlling my seizures, why take the epilepsy meds and go through more side effects? I've been seizure free since. I stopped the anxiety meds 1 year later. Again without consulting with the doctors.

Now, three years later, at age 21, I feel my health is declining.
For at least the past 6 months, I've had what appears to be a tonsil infection as well as oral thrush on my tongue. Which, no big deal except it won't go away. I've been to two different GP's who, at first told me I had all the symptoms of HIV and ordered a complete STD check. (Came back negative for HIV, herpes, etc.) Next, prescribed, on several occasions, anti-biotics this again didnít touch my throat or tounge. (And of coarse a throat culture, multiple times, with nothing being found) We'll the antibiotics haven't done a thing. My frustration level is rising by the month. The taste in my mouth is making me not want to eat. I have pain in my legs and joints, somewhat numb/tingling feeling. (Off and on, sometimes very intense) A few weeks ago I noticed little red, pin sized spots on my arms that are surrounded, in a circular fashion, by larger, white spots. (A total of 5 now) Oh and can't forget to mention the urine inconsistencies.... after urinating, for the next 10-15 minutes or so, if I cough, sit down, or bend over, urine is expelled into my pants. (Fun Stuff!!) Yes, I went to the urologist last week... he says Iím fine. Iíve had swollen lymph nodes in my groin and armpit now for months! Oh, and Iím feeling like my personality is changing. Itís all too weird, and I'm just super confused and lost with symptoms. Any ideas?

I've been gathering up my past medical records in an effort to try to find some connection. I came across some blood work I had done in December of this year. My white count was borderline low, and of my WBC, granulocyte levels were very low. (800). I've been worried about cancer, especially leukemia. My question is... the doctors I've been to seem to think I am fine; I however, beg to differ. Based on my symptoms, does anyone have any ideas? Could my past medical history have anything to-do with this? And last but not least, I donít know where or who I should go see next. Oncologist? Hematologist? ??? Any advice would be greatly appreciated!!! Sorry this is so lengthy, I thank you all for taking the time...

Arraicha 03-29-2005 03:29 PM

Re: Concerned/Confused/Not sure where to go.
That sounds quite like lupus, although I don't know much about the disorder. Perhaps the people in the lupus board could tell you how much what you describe sounds like lupus (and they can tell you what kind of specialist to see)

I'd doubt that your current symptoms are related to the epilepsy you experienced earlier on in life, but they could be, so I'd recommend telling the next doctor you visit about it.

Good luck and let us know what happens!

bodypain 03-29-2005 04:07 PM

Re: Concerned/Confused/Not sure where to go.
Thanks for info!!

last1 03-29-2005 06:29 PM

Re: Concerned/Confused/Not sure where to go.
Hi! First of all I don't think your current issues are related to your ceasing to take the Dilantin. It probably was not a good idea, in the first place, without consulting your phsycian and I also don't think the cessation of your seizure activity was related to the Paxil. Your lucky that you haven't had any seizure activity, however. I think I would change doctors...obviously, despite the current doctors saying that "you're all right", is stupid becuase you are not! So, I would find a really good primary care doctor who has a good handle on blood related issue since your blood work is out of whack. Yes, a hematologist may be a good alternative. But whatever you do, I think your disatisfaction is creating a lot of stress for you and that's not good under any circumstance. Keep us posted! CS

kisa 03-29-2005 11:02 PM

Re: Concerned/Confused/Not sure where to go.
~`Oh my, that is so much for anyone to handle, I agree that you should consider a new MD. , & yes that you have not had any seizure activiy after your wean off the Dilantin is a a good thing . Dilantin is a powerful drug & you are so lucky to have been seizure free. I am no expert, but do have a few questions, have you ever been on steroids?,(for your lungs?), or live in the North East, (tested for lymes?). Had an MRI?, or been to a rhumatologist?, (SP?). I also think like Cflas, that an Hemotologosit is a good idea. I hope you have a good insurance plan !!, You are aware of more than most, & I am sure you will find out what is heads or tails.

You are in my thoughts

bodypain 03-30-2005 04:03 PM

Re: Concerned/Confused/Not sure where to go.
Thank you Cflas for your input. Yes, I will admit the high level of disatisfaction is getting to me stress wise. Trying to deal with it the best possible way I know how, but yea it is hard at times. I do have a question for you though. What do you look for when evaluating a good primary care doc? Thank you for your suggestions!

Kisa, thank you as well for your response!

I have been on steriods a few times for the tonsil problems, and 2 years ago I had an severe allergic reaction of a somewhat unknown origin and was pumped full of setiords while I was in the hopital for two days. But as for you question, never been on steroids specifically for my lungs. (That I recall) I live in the northwest, Idaho specifically. I do not recall ever being tested for Lymes, my litle sister however, did have lyme disease when she was young.
I did have a MRI prior to the epilepsy diagnosis. It did reveal benign cysts in my sinuses, but nothing more. (Speaking of cysts, I also have a benign testicular cyst that is quite painful at times. I have had an ultrasound done on it in years past, just another oddity.) Anyhow, lol, back on track here. No, I have not yet seen a rhumatologist. My insurance plan is ok, not stellar by any means and I am a single "doing it on my own". So, being somewhat strapped financially, I'm trying to not waste money going to frivioul appointments. (Like last weeks urologist)

I look forward to reading you reply. Thank you again!

kisa 03-30-2005 06:53 PM

Re: Concerned/Confused/Not sure where to go.
~~ Josh, I look for someone who is willing to communicate fully with me. I depise the "I am a Dr., & I know better than", I like to hear, "So tell me about yourself, & how can I help?". (I know its bubble gum, but I hope you get my drift). If you feel like a slab on the table, run. Its hard to find, & also look to see how much time they spend with you, (between HMO's & Groups some offices will only spend less than 7.5 min. with each client). This is important. Also, bring all the medical records & tests that you can get your hands on. They do not want to waste the time to back track & get them themselfs, so ya, sign the forms for information, but bring your own copies as well. I would also ask people in the waiting room there view on the Dr., , as well as your pharmasist, (that is a good repore to have, they have more to do with your health care than you think, they are the ones that communicate both with Dr, & insurance). I am sure I will think of other things later on, but this is a start I hope.
~` Look into the Lymes, I ask steroids because I know others that have the same area's that you are speaking about, but a rumatologist as well is what helped them.

~`Let ne know how you are doing :)

bodypain 03-31-2005 06:42 AM

Re: Concerned/Confused/Not sure where to go.
Lisa, Thanks for the advise. You will probably see me use it in my search for a new General Doc. I am at work right now, so probably should get back to it. I will fallow up with you at a later time. :-)

bodypain 04-02-2005 04:55 PM

Re: Concerned/Confused/Not sure where to go.
Hey all... We'll I went to a new Physician, tested my blood for Epstein-Bar, and sure enough its back. :-) 3rd times a charm right? Anyhow, he gave me a dose of steroids to reduce the swelling in my tonsils and throat. We'll see what happens in the next few weeks I guess. Does anyone know if Epstein bar can run a 6 month course? The last two times I've had it, it seems to have passed after a few months. Its been at least 6 this time!!

last1 04-03-2005 09:09 AM

Re: Concerned/Confused/Not sure where to go.
Dear Bodypain: I am so glad you decided to change docs. Kisa's advice was so "right on". Sounds like you're on the road to good health. I'm not sure about the course of treatment for Epstein Barr. I work with a number of docs so will ask around and try to get back to you tomorrow. Cflas

bodypain 04-07-2005 10:12 AM

Re: Concerned/Confused/Not sure where to go.
Epstin Bar... personality changes, urin inconsistancy? Does that make sense?

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