John,
I want you to know that I truly appreciate your guidance. The
secondary tumor issue is not surprising to me in the least. Since late
spring/early summer I have sporadically asked my GP if he didn't think
an MRI or CT was in order. This was due to the nature of my symptoms
and especially in light of the fact that I have breast cancer. When I
began losing my hair, I went so far as to e-mail him about it twice. I
got no response, but at my next appointment my husband and I were
quite surprised (to say the least) to hear my doctor announce,
"although I'm not dismissing you as a patient, I can no longer
continue to see you for these type complaints." There was no
examination and he didn't so much as touch me.
I have had symptoms and physical signs for well over a year and I
suspected that my breast cancer had metastasized. Aside from feeling
physically ill, hard fragments of granular? tumor or tissue-like
material would appear in my mouth that were not produced by a cough.
Next was a sense of fullness and pain in my neck/throat area which
was, and still is aggravated by eating. Now my sinuses are constantly
filled with granular material. On more than one occasion, my GP would
not so much as look when I brought in kleenex with "specimens" in
them. These are just the simple highlights of my incredible struggle
to be believed. My physical symptoms and condition are much more
horrific than I've indicated.
I just received the news about my CNS radiation injury/paraneoplastic
on the 27th. The diagnosis came from another physician, and I am
presuming that he thinks I've already had an MRI and other necessary
testing to rule out cancer. He told me there was no treatment, I just
had to wait and see what happens. I don't know whether my GP is aware
of my diagnosis or not. It truly doesn't matter, as I am taking your
advice and have plans to go elsewhere for my healthcare. I have a hard
time believing that I've slipped through so many cracks in my quest
just to be believed.
Another thought just came to mind. I remember in 1995 radiation was
put "on hold" while they tried to reach my rheumatologist (I had a
tentative diagnosis of lupus). I was told that if I had lupus or
another autoimmune disease they could not do radiation and I'd have to
opt for a mastectomy. My rheumatologist at that time said that I had
fibromyalgia, so we proceeded with radiation. Due to the nature of my
symptoms, autoimmune disease has been investigated many times over the
years. Does anyone know if an autoimmune disease would put me at an
even greater risk of radiation injury?
Many thanks to you John. You've steered me in the right direction.
Take care,
Victoria
"John H." <johnh at faraway.xxx> wrote in message news:<vWQZ9.472$qb2.18880 at nnrp1.ozemail.com.au>...
> I don't know how a blood test can rule out stroke but I think the doctor who
> advised of paraneoplastic or radiation is thinking the right way. I have
> seen references indicating that radiation can cause a chronic
> neurodegeneration but this is radiation directly at the CNS itself.
> Paraneoplastic, by my _very_ limited knowledge at least, is sometimes
> associated with the presence of a current tumour and not a long term
> downstream consequence. Sorry to bring this news to you but if you are
> experiencing paraneoplastic syndrome now it may be indicative of secondary
> tumours. I would find myself one clued up neurologist to examine the
> possibility of paraneoplastic and if confirmed start looking for that. Note
> that chemotherapy can sometimes sensitise the CNS to immunological insult.
> Perhaps you should also consider the carotids, transient ischemic attacks
> maybe?
>> I am way out of my depth here but would advise you find some doctors who
> take your complaints seriously.
>> This ref may help as a starting point, you can obtain it at the PNAS
> website. www.pnas.org I think. :
>> 6/01/03 8:22pm
>>> Onconeural antigens and the paraneoplastic neurologic disorders: At the
> intersection of cancer, immunity, and the brain
> Authors:
> Robert B. Darnell
> Laboratory of Molecular Neuro-Oncology, The Rockefeller University, New
> York, NY 10021
> Journal:
> PNAS Review
> Proc. Natl. Acad. Sci. USA
> Vol. 93, pp. 4529-4536, May 1996
> Location:
> Neuroscience\Ni
> Onconeural antigens and the paraneoplastic neurologic disorders: At the
> intersection of cancer, immunity, and the brain
> Date obtained: 16/05/01
> Web Page:
> Date Read: 19/06/01
> Date to Review:
> Keywords:
> Printed:
> No = subject: 0
> Notes:
> 1:09AM
>>> John H.
>> "Victoria" <victoria at southslope.net> wrote in message
> news:2c430f6e.0301281002.10870a0a at posting.google.com...> > I am a 45 year old female with a complicated med. history and will try
> > to be brief. I had had breast cancer in 1995 and my treatment was a
> > lumpectomy and radiation. My recent diagnoses are: sudden onset of
> > high blood pressure (attributed to prednisone for "suspected"
> > autoimmune disease), Cushing's syndrome (due to the prednisone, but
> > being investigated for an adrenal tumor) vestibular neuropathy with
> > hearing loss, dehydration, abdominal stasis, scarring alopecia, and
> > errosion in my stomach. I also have a recent onset of loud snoring and
> > sometimes make a high pitched whistling noise while I sleep - per my
> > husband. I am unable to sleep or even lay on my back as my breathing
> > is obstructed - but only when I exhale. This occurs with an audible
> > "flop" or click, and I can feel something moving? in my throat or
> > trachea. I have a thick family history of coronary artery disease. For
> > example, my sister had a double bypass at age 39 and my maternal
> > Grandfather died of a heart attack at age 32. Although I've had
> > symptoms since the 1980s, autoimmune disease was completely ruled out
> > this week. I am doctoring at a large teaching hospital and have been
> > seen in numerous specialty clinics. The specialty clinics do not seem
> > to be communicating regarding my health care. Although I may receive a
> > diagnosis in one department, the next department is not aware of it.
> > My GP is not doing a good job of putting the big picture together for
> > me as he is only available 2 days per week. He recently apologized for
> > not keeping up to date with my case.
> > I have had recurring episodes of confusion and sometimes experience
> > anger or rage. When these episodes first began, I was choking on water
> > for no apparent reason, but now I choke on food. I also experience
> > episodes of "tipping over," tripping, shakiness or tremors, slurred
> > speech, feeling cold and numb (especially in my extremities), some
> > drooling from the left side of my mouth, and headaches unlike any I've
> > experienced before. I'd describe them as sharp lancing pains in my
> > head, and sometimes they are just fleeting. I am articulate, but have
> > difficulty expressing myself. I guess I would call it the inability to
> > "find the right words" during these episodes. With great frustration,
> > I either end up rephrasing my question or just shake my head and give
> > up. I was taken to the ER during the 1st episode as a patient
> > presenting as a "possible stroke victim." My physician ordered blood
> > tests and a chest x-ray (I had just had a bronchoscopy 2 days prior to
> > the ER visit). He told me there was nothing wrong with me and not to
> > waste my money on another ER visit and ambulance ride. Please keep in
> > mind that this was my first ambulance ride and the first time I
> > requested medical assistance via 911. When my husband and I asked the
> > doctor what I should do if this were to happen again, he replied that
> > I should "take an anxiety pill." The other two times that I went to
> > the ER, I had an irregular heartbeat and was diagnosed with fluid
> > depletion, atypical chest pain and then released. I have never had an
> > MRI or CT scan. Although I think I know the answer, can a stroke be
> > ruled out with a simple blood test? Please tell me what the "typical"
> > procedure is for ruling out a stroke.
> >
> > I recently had an endoscopy and anorectal manometry. My
> > gastrointerologist said that his findings indicate that something is
> > destroying my CNS. He said they were either paraneoplastic? or damage
> > caused by radiation during my breast cancer in 1995. Again, although
> > he practices at the same hospital, he did not know of my other
> > diagnoses aside from the vestibular neuropathy.
> >
> > I'm tired of trying to manage or orchestrate my own health care (I
> > don't WANT to and I'm obviously not qualified) - I'd sure like some
> > "pointers" or to at least get some feedback.
> >
> > Thanks in advance,
> > Victoria