Would Like to Ask Some Questions.

SpazEllie · New User Joined: 27 Sep 2007 Posts: 1

Hello. I apologize in advance for the intrusion. I have had such a wide array of symptoms and for some reason, whenever I try to do some online research Lymphoma seems to always be in the results. I figured I would search for forums, and hope that maybe someone could provide me with some insight. If not, just a pleasant, "You're not crazy" will suffice. Smile

To start, I am a 30 year old female. In a perfect world, I would consider myself healthy but it's not and I'm not. But I manage as able. I've had my ups and downs with my health, but most things I am able to adjust and adapt to the situation, and things are somewhat OK.

Below I will provide a list of my symptoms, and then below that I will provide what I've been diagnosed with.

Joint pain and swelling (it is typically random, and has started in August, the 9th to be exact)
Muscle pain and weakness
Mottled skin
Headaches
Low grade fever (99.5-100, daily)
Neck pain and stiffness (It feels "crunchy")
Back pain (central, stays at spinal area)
Memory loss/cloudy thoughts
Balance problems (worse than usual for me)
Blurred vision, eye pain
Swollen lymph nodes in neck, clavicle area, and groin that I can visibly see (it was so swollen it looked like my right clavicle was broken)

I have a history of seizures which started around the time of menstruation. I have a history of cysts and have had several mass removals from my groin and one from my right breast. Currently, I have two masses in my right breast, 3 in my groin (I gave up on removal, it clearly doesn't work in my case). I have had 2 masses removed from my uterus and was diagnosed with endosalpingiosis (or something that looks like that but is spelled properly). I also have a mass on my liver, but it's really small.

In short terms, I like to call myself "Lumpy".

I went to Kentucky in July where I found a circular rash, I am currently being treated for Lyme Disease, however, they are using my symptoms (aside from the joint pain and swelling, most were present yet not as severe) as grounds for my diagnosis. I keep testing negative for Lyme. I did take pictures of the rash, if that helps.

I have been on antibiotics for 3 weeks now and I keep getting worse, to the point that I am feeling constant pain daily. Prior to this, I did have aches and I did have random lymph swelling in my groin area but I thought it was normal for me as I was "lumpy".

All websites have symptom lists, but I've found that the people who experience the symptoms always have a better list than what you can find online that someone without the disease in question wrote.

I was wondering if perhaps any of my symptoms would issue worry for anything that I am not being treated for. Should I get pushy about testing for the swollen nodes? I can provide you with a picture, actually.

I didn't have anywhere else to upload, so apologies in advance that Kodak will show the pictures on coffee mugs and mouse pads. Sad

Anyway, it is my right clavicle (your left) in the picture. This was taken I think a week or so ago. From top to bottom, was a three day 'series' of Monday, Tuesday and Wednesday. I've learned my body will hide things by the time I get to the doctor so I take pictures to save myself from looking crazy.

Oh, anyway. I have been diagnosed with Epilepsy (although I've only had ~10 GM seizures in my life). I do have seizures that generate in my parietal lobe but they were associated with menses which has been stopped with medication. I also have Trigeminal Neuralgia, but it isn't as severe as most have it and for that I am thankful. And as stated above, they clinically diagnosed me with Lyme. I've had 3 negative tests so far.

I have been tested for every version of hepatitis, hiv, every STD you can imagine, toxoplasma, parvo, and lots more. I was negative for a lot of stuff. My CBC and average bloodwork showed a few things high and low but nothing that raised a brow with any doctors.

I am sorry for the length and sorry for barging in. I was just hoping someone may know something that I could do.

I know I had the rash, but I don't think I have Lyme as I am not responding to treatment (3 increases so far) and I keep getting worse. My lymph nodes keep swelling everywhere. It's actually quite painful as they seem to swell in areas I need to move around.

Am I just being a sissy about this? I've had surgery a lot and never shed a tear and I cried all morning because I feel like my head is filled with water and is going to explode. The pain shoots down my neck (my neck is lumpy) and down my spine. When I feel the pressure my ears ring and then I get dizzy. I think I have (or had?) a high pain tolerance, but I can't tolerate this.

I have the following doctors.

Infectious Disease
Nurse Practitioner
Rheumatologist
Neurologist
Epileptologist
Immunologist

I don't know which one to see. I know the IDMD is kind of, well, not to be mean but he's stupid. I don't think I have lyme, but he told me the test is accurate. I know that it's not, and my other doctors agree.

I do not want to make myself paranoid or self diagnose. But I do want to know what I should be doing, if anything.

Thanks in advance if anyone can help me and if you read this far, thanks for putting up with my babbling. I tend to babble when I stress out.

brainman

SpazEllie, I am truly sorry about your health concerns. Your symptoms are so complex that it could be anything. Since no one can diagnose you over the Internet, my advice is for you to continue to work with your medical team to find a solution.

I had to delete your link because the forum has a policy that says new members cannot use links to other sites until they have been an active member for one month and posted 10 significant messages (no duplications or frivolous messages will be counted). This does not mean the I am not concerned; I am.

I will the thinking about and praying for you. Please, keep us informed.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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