Frustrated and confused - Lymphomas Message Board

carr · 08-13-2003, 01:25 PM

Like a lot of the other people on here, I am new and hoping that maybe someone has had something simular. I have for the past 6 mths been seeing doctors and having tests done with no success. I am tired beyond belief, my body feels like jello most the time. I have tiny red spots like little blood blisters on different parts of my body, swollen tonsils, swollen lymphnodes. One that sticks out the left side of my neck and almost a half inch. Along with this I have low grade fevers on and off througout the day. I don't thing I have what are night sweats, but get extremely hot a night and can not sleep. A few weeks ago I had a sharp pain shoot down my left side from my neck to my hip and almost dropped my daughter. Doctors have done blood work that usually comes back normal and have repeated CT scans that keep showing the same thing. I am going to have another needle biopsy since they missed the first time and a CT on the chest also. They have tested me for strep and mono which were both negitive and have tried antibiotics with no change. It wouldn't bother me so much if I weren't so worn out. I'm frustrated and ready to just quit with the doctors. Any advise?

[This message has been edited by carr (edited 08-13-2003).]

bella67 · 08-13-2003, 06:46 PM

Carr,

I can't really give you advice on what is wrong with you, but I can at best relate to you situation. I have been on the "medical rollercoaster" for a year now. I've been to my GP, ENT,Internist, Rheumy, and now lastly I had to see a surgeon. I've had 3 lymph nodes removed from my neck (which were benign), I just had a cyst removed from my leg with no results on the biopsy yet. I have had numerous infections, weakness, on and off high blood pressure, you name it I've been tested for it!! I tested positive for a few things, cat scratch fever and parovirus which really didn't help the docs come to any real conclusion. Over the winter my Rheumy suggested that I might have fibromyalgia, but that one didn't sit too well with me since my symptoms weren't consistent with the disease.

Before all of this I was a fairly healthy person with a lil back pain from arthritis. I'm a mom of 2 small kids also and I understand that's probably the biggest fear, being too sick to take care of your children.

Right now I have a flu and 2 weeks ago I had bronchitis, I have to go back in to see the surgeon tomorrow cuz my incision opened up.. uggghhh...

Well, hang in there and let us know how you are doing. I'm sure if you are persistent and follow up with good professionals you should eventually find the source of your illness.

Good luck!!

carr · 08-14-2003, 06:01 PM

Thank you for your advise. It is advise more than once I have gotten. Unfortunately I am in the military and they tell you who and when you can see a doctor, and right now they are not ready to send me anywhere else. Along with you are not aloud to speak you mind when you think what they are doing is completely wrong. There is were the frustration lies. I will keep on them and make them keep seeing me. Thank you for your input and good luck with your and your situation. It doesn't sound much better than mine.