Hi - wonder if anyone can help before I call NHS Direct tonight …I have an appt with my GP tomorrow lunchtime, but the problem seems to be getting out of control.
Quick synopsis…last weekend I felt a tender spot around the bottom of my left shoulder blade, like a bruise. Hubby looked…3 cm red line…today the area is purple and red with about 8 different lesions that look like bleeding under the skin, now some 10 cm wide. He has taken a photo. I had a similar problem on my inner thighs and lower abdomen when in Spain late August. GP said she had only seens these kind of lesions with meningitis, which I did not have, googled my symptom and said it was “mountain sickness” and she didn’t even know I had been in a car up a mountain some 7,400 ft! I think she said I had peripheral purpuric oedema. I have tried to Google the symptoms, but mainly come up with childhood problems and leg/ankle problems. Can’t find anything on shoulder blades or lungs.
If Lisa’s Mum Sue sees this, can she tell me, if it is not too distressing, what Lisa’s lesions were like on her back? Besides the “bruising”, the area is puffy and full of fluid.
I am due to go into hospital next Tuesday for a colonoscopy for strictures and severe inflammation in the intestines…already had a small bowel follow through last week that showed multiple strictures (largest 15 cm) in my small intestine, but private surgeon said he doesn’t want “any surprises” when he operates and does stricturplasty, if possible, of the narrowings and/or resections of the small bowel. I didn’t mention my bc concerns, but should have. It was an hour long consultation with a sigmoidoscopy and I was struggling to take in all he said.
My symptoms over the past 5 months have been synonymous with breast cancer mets to the intestines:
weight loss of some 20 lbs
total loss of appetite - living on 4 bottles of Fortijuice daily, and some white wine.
nausea
steattorhea - stools floating when I manage even home made blitzed soup.
Severe lower abdominal pain on rising, as early as 5 am.
Gastroscopy in Juy 08 showed multiple ulcers.
CT scan July 08 showed severe inflammation around terminal ileum
MRI Nov 07 showed strictures.
NHS Gastro was not concerned in July, although I was, until I saw him in October with big problems with my bloods - bone marrow, (probably due to the methotrexate chemo I inject each week for my Crohn’s), anaemia, high lymphocyte count, etc. etc. and referred me to a gastro surgeon whom I saw at the Nuffield a whole month later as gastro did not ask for a private appt. Surgeon has pulled out all the stops and tests are undergoing, but I am deeply concerned about bc mets to the GI tract - it is rare, but considering I have had Leishmaniasis (caught when I lived in Spain and fed an abandoned dog who had it), erysipelas twice and Mondor’s disease, I know I have crappy genes. I googled bc mets in the GI tract and found an article by Mayo clinic that seems to correlate with my current symptoms. I did ask my gastro in July when I had the gastroscopy if he had heard of this rare problem, said he had but not come across it! End of conversation!
Does anyone have any advice tonight? I feel my body is falling apart, I only weigh 6 st 10 lbs, have an 80 yr old husband who desperately needs me. He has been having blood in his urine for 3 months now and burning on urination. Useless GP (ageism?), now on his 4th course of antibiotics and has a kidney scan next week. Jeez, can it get any worse?
This forum is the only place I can think of coming to…my bc dx was Jan 2003, idc 2 cm, stage and grade 2, 3/18 lymph nodes malignant. WLE, total axillary removal, 6 x FEC, 6 weeks of rx, now on exemastane. Had to discontinue bisphops, although osteopenic due to 30 yrs of steroids, because of joint pains.
Any advice or help is so welcome.
Liz.