For anyone who has been experiencing these sensations: have you, in the past year, been treated with a fluoroquinolone-based antibiotic (levaquin, tequin, cipro, floxin, etc)? If so, you are likely suffering from a severe adverse reaction to that drug. These reactions can come on long after you are treated, and cause long-lasting pain and other symptoms. Very often those hurt think they have MS, or ALS, or fibromyalgia, or a host of other maladies. They spend thousands of dollars getting MRI, blood and other tests done. Doctors just give them more drugs and tell them it's all in their heads.
The reality is, they have been poisoned by an antibiotic that wasn't thoroughly tested before being released on the public.
If you are suffering these weird symptoms, I suggest you check out the following sites:
www.medicationsense.com
www.fqvictims.org
http://health.groups.yahoo.com/group/quinolones
You mentioned that your Dr. doesn't seem to take you seriously because of your age. I am 30, I started having problems in my early teens, and began searching for an answer at age 18. Since the advent of the internet, it has of course been much easier to do my research, and this has been a great tool for me and for my Dr. I have a very good Dr. now, and while I think he saw me as a hypochondriac at first, he is very compassionate, and when I kept telling him how much pain I was in (to the point that I could not lift my baby daughter out of her bed at night to nurse her) he took me more seriously, and did a lot of tests. He still calls me an enigma. Sometimes he just looks at me, and says "you're hard!". He is an internal medicine specialist. I had a rheumatologist once, she REALLY thought I was a hypochondriac. She told me that I must just have Osteoarthritis (old people arthritis). I had just turned 26. Even the Arthritis foundation had no information on OA in teens and young adults. I never went back to her. (Duh!)
Does taking the immune suppressing medicine make you sick more often?
I have actually been sick less this past winter since I startes taking Arava. It actually just supresses specific parts of the immune system.
And does it help with the joint pain as well as the organ involvement?
It has definately helped some. The biggest thing I notices after just two weeks of taking it was that I had more energy, and I got fevers less often. By joints, especially my back still give me trouble, but not quite as much. It will take a long time to see if it's helping my organs. I'm hoping for the best that it will improve my lung function.
Is your SED rate usually high?
My SED rate has never been very high. At least no Dr. has ever said it was. A lot of my blood work has not been high enough to cause alarm. The ones that have been consistently high are ALT and AST. These measure inflamation in mainly the liver, but also heart and kidneys. My liver was inflamed at least two years before I got a new Dr. who told me about it.
Does it take you AGES to heal just regularly?
If I bruise, it takes a long time to go away, especially if it is a deep bruise. I have what I refer to as "permanent bruising" on my leg from a car accident over 8 months ago. The area is still purplish, and tender, but not really bad anymore. If I get a cut, it seems to take a long time to heal too, but this seems to be a new development for me.
You really do sound like you have Lupus. The blood tests are not the only criteria used for diagnosis. To make a diagnosis of Lupus the patient must have had at least FOUR of these 11 manifestations at any time since the onset of the disease. Here is a list:
1 Malar rash fixed red rash over the cheeks
2 Discoid rash red patches of skin associated with scaling and plugging of the hair follicles
3 Photosensitivity rash after exposure to sunlight
4 Mucosal ulcers small sores that occur in mucosal lining of mouth and nose
5 Serositis inflammation of the delicate tissues covering internal organs and abdominal pain
6 Arthritis -very common in lupus, pain in the joints
7 Renal disorders usually detected by routine blood and urine analysis
8 Neurological disorder seizures or psychosis
9 Haematological disorder haemolytic anaemia, leukopenia, thrombocytopenia
10 Immunologic disorder tests on LE cells, anti-DNA and anti-SM antibodies
11 Anti-Nuclear Antibody (ANA blood test) when found in the blood and the patient is not taking drugs, it is known to cause a positive test for lupus in most cases, but is not necessarily conclusive
The main proof of kidney malfunction is Protein in the urine. Bi-polar disorder is among the psychiatric problems that sometimes accompanies Lupus. Many autoimmune patients have a remission during pregnancy. This is because a woman's immune system slows down during pregnancy so it won't reject the baby. Most autoimmune diseases overlap. The treatment for Lupus, Scleroderma, and Rheumatoid Arthritis is about the same anyway. I also had to give in to a diagnosis of Mixed Connective Tissue Disease, because I fit some criteria for Lupus, and some for Scleroderma. The only reason to take Plaquenil if it doesn't improve your symptoms, is if you have tested positive for anti-phospholipid antibodies. It is known to reduce the risk of blood clots in Lupus patients with Anti-phospholipid Antibody Syndrome. It is important to beon some sort of medication to slow the progress of the disease. The newest class of these drugs is known as DMARD's. They slow down your immune system (kind of like when you were pregnant) so you won't get so much organ damage. They also make you feel better. I take Arava, but there are a lot to choose from. You need to get a good rheumatologist, and discuss your options. You may feel like you're okay sometimes (that it's all just been in your head), I feel that way too. But you know it's not. For me that is always re-affirmed when the symptoms kick up, and knock me on my butt. I hate taking medicine every day, but it's better than organ damage. It took me 15 years from the onset to get a diagnosis. By then I already had damage to my lungs, heart, liver, digestive tract, kidneys, and vascular system. I am now waiting to see if my organs will begin to heal themselves now that I am receiving treatment. Good luck. Post back if you want.
Oh yeah, and does it take you AGES to heal just regularly? If I get a cut or a bruise, it seriously takes like five times as long to heal than other people I know, such as my husband.
Thank you so much for your reply. Reading the list, I have also had the nose ulcers, like canker sores in my nose. My doctor doesn't seem to take me very seriously because I am young (25) and not much shows up in my blood in any serious amounts. He doesn't seem to think that when you put all of these things together it means anything. I have DEFINITELY thought it must all be in my head, and it's hard to get anyone to sympathize with me when I can't point it out on an x-ray or something.
Does taking the immune suppressing medicine make you sick more often? Like, common cold sick? And does it help with the joint pain as well as the organ involvement?
It's hard to think it's not in my head when my blood doesn't scream that I'm sick. Is your SED rate usually high? Mine has occasionally been a bit high, but not as high as my legs seem to say it should be!
Oops I also forgot that I've been having terrible headaches lately. I think this is because of sinuses because my throat has been sore for about two weeks now and it's just that time of year, but thought I'd mention it! I do sometimes have this weird pain in my head like someone is jamming an ice pick in the crown/right of my skull.
6. Had elevated liver enzymes. Had full work up done and it was found to be "not so bad".
7. Went pretty nuts..."bi-polar rapid cycling". Improved with meds.
8. Visual disturbances...dark shapes. MRI was clean.
9. Got pregnant...for the first time in six years- no pain! Started towards preeclampsia and they induced me early (HBP, insane swelling). Baby was fine, a month and a half later...pain is back.
10. Vision is getting terrible all of a sudden. Very blurry with contacts or glasses. Contacts really irritating me. I probably need a new prescription, so I'm not too worried about that.
11. Finally, I have had bleeding from my rectum for over a year now. It's not every time I have a bowel movement, it seems very random. It is bright red and I have seen clots in it. Blood on toilet paper and colors the water a deep red. I have assumed this is hemmorrhoids.
Oh and I forgot that I had a rash in the beginning too, when the leg pain started. It was like hives all over my body, especially my face. Have had very small versions of this a couple times since then. I am off of almost all of my meds now because they really didn't seem to help much at all. The pain in my legs is pretty intense very often. It is related to the weather and stress I have noticed. It is so bad that it regularly keeps me awake and sometimes it is hard to walk. Nothing has ever gone really wrong with me, just everything has gone a little wrong it seems! Maybe I'm a hypochondriac, but my husband doesn't have all of these problems. I am really doing well now aside from the awful pain (what a funny sentence). Any ideas or advice? Am I just making a big deal out of a lot of little deals?