I was wondering how long someone can have Leukemia and go undiagnosed before it is very obvious what is wrong? I am 28 and have had some really crazy symptoms since the birth of my daughter in 2004. It has been a never ending battle of frustration. 3 months after my daughter was born I started having problems with my legs feeling weak and giving out from under me, I lost 20 lbs in 2 weeks, and started to have blurriness in left eye. Then in Feb of 2005, I had to be hospitalized because I couldn't walk or barely talk, and had severe fatigue. They thought I had a stroke because my left eye was droopy. I have been bruising really easily for a few years now and my anemia has not been under control. I have started a new symptom lately that really bothers me because I cannot get comfortable. I have started itching all over despite drenching my self in lotion. I have also noticed my lymph nodes slightly swollen on collar bone, pelvic area, under arm, and in neck. They are not very swollen, about the size of small grapes. I have been told that I possibly have MS or Myasthenia Gravis, but NO Lesions means no diagnosis. I have a new neuro appt on Feb 4th, 4 years after my first initial "attack" of whatever is going on with me. I have seen 3 neuro's, one hematologist, and 2 PCP's. I am so frustrated at everything and wish for an answer. My CBC's are always abnormal, but I haven't had one since 4 months ago. I will have to try to find those results. I would appreciate any advice, I can get. I usually post my stuff on the MS forum since that is what 2 doctors have told me I possibly have. I don't want something serious like Leukemia to be what is wrong, I just want to know what is wrong with me and I want to play with my kids without saying " wait a minute I need a break" after only 2 min of playing! I would appreciate any advice and if someone thinks this sounds familiar, please let me know. I forgot to mention that I have horrible heat intolerance and I have been getting heat rash every time I take a shower now. I have also started to lose weight again. I just had my second child in March and I am already back down to 120. I have lost all of my pregnancy weight and then some since then.
Oddly enough, something makes me wonder about lyme disease with your symptoms.... which is sometimes misdiagnosed as MS. There are a few tests available and the symptoms can vary wildly from patient to patient,,, but the cure is quite simple IF one of the many types of tests come back positive. Has your doctor suggested this ever that you can recall?
I have asked to be checked for Lyme disease, but have only been tested for Rocky mtn spotted fever. I guess since I never had the bulls eye rash, they didn't think it was necessary. I have had a really hard time getting doctors to listen to me because they think I am depressed. I was not depressed until all of this started, it seems like one of the symptoms. I see a new neuro on Monday, I hope she hears my cry for help. I have also seen an ENT for a choking feeling. He said that I am having spasms in my throat. My test to check for anti-myelin antibodies turned up all positive titers. A doctor I work with in the lab said that something is attatcking my immune system, but she doesn't know what. All I know is that something with my pregnancy triggered my symptoms or made them worse. I will wait and see what the new doc says on Mon. and hope that she can shed some light. Katie 22 I feel for anyone that has had the same symptoms as I. Especially if you have kids. It is so hard to get the energy to play with them. How long have you guys had your symptoms? I feel like the longer I go on without a diagnosis, the more my quality of life goes down and the more the doctors are apt not to believe something is wrong. Thanks, for the replies, I appreciate any kind of input.
I have had all of my symptoms for almost 4 years now and I know that Chronic EBV can lead to MS or Lymphoma. I hope that my new neuro puts all the pieces together. I have so many symptoms that I don't know what to think anymore. I have positive anti-myelin antibodies CNS and peripheral titers, positive EBV titers, slightly positive Rheumatoid factor, anemia, fatigue, muscle weakness, elevated urine creatine, heat rash, itchy skin, negative ANA, negative MRI, Abnormal Evoked potential test in left eye, blurry and ptosis in left eye, confusion, choking sensation, and weight loss. I feel like I am falling apart and I am only 28 years old. This all started when I was 24 and has made me feel like I am 80. Sorry if I am writing a book, I just need to vent sometimes. Thanks for listening.
Im not sure what kind of insurance you have, but if its an HMO that may be part of the problem with getting somone to hear you unfortunatly. :-( Im not sure but mabey just mabey if you did a hard internet search with the term "lyme disease expert" and put in your home state,,,,,,, it might help you find somone willing to see you without a refferal. There are folks who specialize in lyme disease now (although lupus or ms may also be directions Id explore throughly first too, so I think your on track atleast!) who have ALL of the tests available now for lymes. I do wish you the best friend,,, what a hard road your on.
Thanks so much for taking the time to respond Jennifer. I will definitely do a search like you said for Lyme disease. I see my new doctor Monday and I am hoping that if I make out a time line it will be easier for her to look at than try to remember everything at the last minute. Thanks so much for all of your advice. I appreciate everything! Oh, yeah one more thing, do you think a hematologist would know anything about Lyme disease? I thought about going to see one for the anemia and other issues I am having. Talk to you later friend.
Iv been around the chemo block with all there fun little tests, but honestly no I really couldnt tell you if they would be able to help you out or not. I would definatly ask though, because they may atleast be aware of what different tests are available to their lab,, although whether or not she can order those tests without a doctors recommendations somonelse will have to tell you. Please do report back on what happens, Ill be watching and waiting. :0)
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