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1 20th July 06:44
rita.gacon
External User
 
Posts: 1
Default MED: Tendinitis (Rita) (down tendonitis cancer fibromyalgia)


Hi Rika, Good Morning!! 7.45 am in the U.K.

Have read the site. Yes,I have tendonitis.Polymyositis:I was 37 years old
when I woke up Paralysed in September 1977. It happened again the following
year. I was to have been referred on to a Professor of Neurology, but
someone forgot to write the letter. I have my Medical Records now.I worked
very hard for more than six years running my restaurant 80-90 hours per
week. Because I did nor get Diagnosed with ME for six and one half years,
in Junel983, so the damage was done. the patients in the Royal Free
Hospital, London, who got ME., recovered, in bed resting, whilst the vast
majority of the staff DiD Not. Which shows that immediate diagnosis of
this/these viruses, illness gives a better outcome with complete bed rest.I
may have more than one virus, but it is a long time since any investigations
were done on me more than 23 years ago. I am asking for a referral again to
the London Hospital that diagnosed me with ME., after I have got this second
cancer treatment over. I only had my op Wednesday, and may have to have
Radiation Therapy: again!! The cancer pills are making me very very unwell,
and my pains have increased to where it is intolerable, as they cause
fibromyalgia !! I have double my intake of dihydrocodeine. I also had very
severe neuralgia and neuritis up and down the muscles in my body. Rita
U.K.
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2 20th July 06:44
rkageyama
External User
 
Posts: 1
Default MED: Tendinitis (Rita) (stress prednisone)


Dear Rita, Good Day! At noon In Japan :-)

Well, I am terribly sorry to hear your past experience
and your current situation. Hope your treatment will
be successfully done and your quick recovery from current
"extra" difficult time...

What is most, thank you very much for your sharing under
such a difficult time, indeed.

In Japan, we are also told "Most of the cases, CFS is curable".
No kidding. I am the one who had suffered from CFS since
1979 (15 yo) and who had kept coping with doctors, "All in
your mind", since then. I even think the diagnosis of Relapsing
Polychondritis would make much quickly if CFS was "interpreted"
right way. (my RP was found 10 years from its onset while, after
all, I had been suffering the "same kind of disease" (CFS) for 15
years).

I am interested in Who messed up CFS/ME and GWS.

Rita, you have Neurological problem.
RP (Relapsing Polychondritis) has also Neurological problem.
http://www.polychondritis.com/Neurological/NerologicalDisorders.html

Why has only CFS/ME been "discriminated"?
Causes of all auto-immune diseases are the same,
"Viruses, stress, drugs, something unknown".
All auto-immune diseases are also said "the early
diagnosis, the better outcome".

Detail of the symptoms of Relapsing Polychondritis (RP)
are in the following (I'll show it as an examples of one of
THE rheum diseases).
http://www.polychondritis.com/Anatomy/Anatomy.html
I have not searched other auto immune diseases deeply
but, as CFS/ME activists started to point out,I believe you'll
find lots of interesting information. (All are "Immune problem")

BTW, this must be drifted from the topic a little but, I wonder
some of you on the list might want to check whether or not you
have RP, I personally don't recommend the doctors of the big
names in RP field, (Dr. Trentham and Dr. Buckner).
This is simply sharing my personal experience but, when I was
in a desperate situation (regarding the treatment) after getting
the diagnosis (my blood test kept showing negative and my
doctor at Red Cross was not able to judge if he should have
started up prednisone), I contacted both of them to help the
doctor at Red Cross by giving him some information.
I was almost going to loose my hearing then. I told them that the
doctor who had seek the information was the vice president of our
Red Cross. I also explained very details of my medical history and
condition/situation to both of them. (I informed both of them enough)
Both of the big names, after all, did not give us reply (ignored).
There must be lots of reasons for them (busy, foreign country and
so on) and there must something that I must be blamed by them
(Which I can not think up though). I was simply disappointed for
these doctors. Not only one, but also TWO of them ignored the
call for help.

Even if you live in different countries, they could have done
"something" to help one of the patients and doctors. (Just sending
us "Sorry, we can not help you" with general information would
have encouraged the patients/doctors in a desperate situation).
Some doctors still don't accept the information brought "by patients".
-You know about it.-
RP patients also have to cope with "All in your mind" because
there is no reliable blood tests for (probably, the same as some
of other Rheum diseases) . It is easy for specialists to notice that
it is difficult for "doctors" (their colleagues) to face to it, also.
-You know about it also -
I would like to ask doctors/researchers to have more "ordinary
sense of common", besides "ordinary sense of logic".

Take a great care, Rita,

Big Hugs,
Rika with great concerning about "CFS/ME/GWS".
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3 20th July 06:44
rita.gacon
External User
 
Posts: 1
Default MED: Tendinitis (Rita) (down)


Morning Rika !! 5 a.m. here in U.K. Cannot sleep !! Have stored the sites
you gave me. Will study them at length when brain rested. The WONDERFUL DOC
at the London Hospital was a dissenter against ME., before a paper came out
in June '83 by Behan, Behan and Bell, re; diagnosing and proving ME. The
damage was done by a two doc team: MacAvedy & Beard, who collected all the
staff medical records from The Royal Free Hospital outbreaks, - female only
- and, as no organic evidence was able to be proven at that time, put it
down to "Mass Hysteria". Now science has moved on and they can find these
viruses by FISH, PCR, and Western Blot, only if they specifically look for
them. I will reply further when I have slept. I am going to get that
referral and get an update on my blood tests. Prof.A.Melvin Ramsay pioneered


debatable that M.E., exists. I have a great deal of his "nonsense" stored on
this too. Could send you some??? My symptoms are ALL M.E. Be in touch
soon. Must sleep. BIG HUGS TO YOU TOO !!!!!
"Rika Kageyama" <rkageyama@dol.hi-ho.ne.jp> wrote in message news:
<005b01c5ce16$06233460$6de766db@RIKA>...
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4 22nd July 16:51
rkageyama
External User
 
Posts: 1
Default MED: Tendinitis (Rita) (heart)


ps. I am not blaming Cheney at all !
Obviously, he has done his best to help patients.
I meant "the doctors who have power".
And, he could be solving the mystery of the
heart involvements in auto immune diseases.

Hugs,
Rika
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5 22nd July 16:51
rkageyama
External User
 
Posts: 1
Default MED: Tendinitis (Rita)


Morning Rita :-) 4:16 am here in Japan.
Woke up for some minor inflammation.

Yes. I can understand it, Rita :-)

For someone who was confused by my post and contents....
What I have been worrying is that "where CFIDS/ME should
belong to". Current situation of CFIDS/ME can make only
patients/doctors confused simply.
(Most researchers/doctors sound not to admit that CFS/ME
is immune problem -- This is my impression so, if it is wrong,
please excuse me. To me, doctors/researchers keep insisting
the "different" view in CFIDS/ME, such as Endocrine problem
and so on.... Although I don't know they are awaring what they
have done....)
This situation continuously leads patients to be ignored by doctors
while you have so much immune-problem like symptoms...
(Thinking Rita's experience, others experience, my experience,
CFIDS/ME seem to be immune problem to me... I am lay man
so, I might (must) be wrong, though...)

And, the very concerning point for me is that IF you make mistake
to "interpret" the symptoms, you can never reach to the cure or
quest for cure. (In general)
So, I am worrying if CFIDS/ME patients (in general) will be
all right to leave the current situation...
This is (was) MY problem, also. So, I can not stop worrying
and caring about you...

HUGE HUGS to you, too, Rita :-)
Rika, ****ing a zinc drop

ps.
Thanx for the files, which you kindly sent to my private
address ! Now, you will take care of yourself.
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6 22nd July 16:51
rkageyama
External User
 
Posts: 1
Default MED: Tendinitis (Rita)


I was going to write "minor infection"!
Well, I feel Vit C, Vit A and Zinc drop works for
quicker recovery. (Better than nothing?)

Hugs,
Rika
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7 22nd July 16:52
rkageyama
External User
 
Posts: 1
Default MED: Tendinitis (Rita)


Hi All,

Just sharing.

Today, I learned that there is, at least, another person
who was diagnosed with Relapsing Polychondritis (RP)
after having had diagnosed with CFS for two years or so.
I did know lots of RP patients did have FM diagnosis.
I assume if you can investigate all ex-CFS patients, you
would find lots of "ex-fellows" in different diseases.
(It is shame that most of them did not announce proudly
that they DID have CFS. But, that is their problem and
that is understandable, also).

What I want to tell you here is "Have a confidence in your
symptoms". It seems to be true that some of us unfortunately
fall into other bad diseases, but, that's that. What I want to
keep telling you is "You are NOT suffering from stupid symptoms,
which our medical and ordinary society have treated us for
decades or for hundreds years".

And, one more.
"Let's try to find some cure".
(And, please let me join the club! :-)

Hugs,
Rika Kageyama
CFS since 1979
RP since 1995
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8 22nd July 16:52
rkageyama
External User
 
Posts: 1
Default MED: CFS (aka Tendinitis (Rita))


Of course, there ARE ex-CFS patients
who announce their past honestly.
(The one in RP, I learned today, was one of them).

So, Have a confidence and let's concentrate to have
CFIDS/ME/GWS belong to where they should to.
(And, "cure"!!!!)
Our (your) researchers lost the way and wondered so
strange paths for many years (Damn for them! LOL)
that they do know many strange "and" useful things !

Hugs,
Rika
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9 22nd July 16:52
rkageyama
External User
 
Posts: 1
Default CFS (aka Tendinitis (Rita))


Dear All,

Another concerning and sharing.

I had got diagnosis of Chronic Fatigue Syndrome at University
of Washington in the US in 1989 (CFS onset 1979), confirmed
at three different university hospitals in Tokyo, in 1991, 1999
and 2000.
Then, I got the diagnosis with Relapsing Polychondritis (RP)
this June and July in Tokyo, Japan in 2005 (RP onset 1995).

The point is that I had 10-year "overlapped period" with CFS
and RP. (Obviously I developed typical symptoms of RP in
1995 and got diagnosis with RP in 2005. I had seen with CFS
doctors before RP diagnosis. Interesting thing was that I
needed to leave the CFS doctors to get the diagnosis for not
only RP (Rheumies), but also TB (TB specialist)... ).

The two Rheumies who gave me RP diagnosis at two different
hospitals in Tokyo were completely ignorant about CFS. So, to
my eyes, CFS doctors were more deniable about the possibility
of RP or whatever other diseases once they had given the
CFS diagnosis for their patients.

Of course, at least, RP and TB are not well known disease
(TB is not well known nowadays also) and I can not blame
CFS doctors completely with my experience only.
But, I still remember that I was frightened that the diagnosis of
my TB and RP were almost "too late" because CFS doctors'
strong denies.

Some might argue but, I feel CFS doctors have become narrow
minded more and more and I even feel it's not exaggerated to
say it's dangerous to leave these situation of CFS.
(Of course, as Rita keeps sharing her experience and knowledge,
there are lots of open minded CFS doctors but, most of the
general CFS doctors are like mine...).

What I can clearly say is that current CFS situation confuses
patients and medical doctors very seriously. And, I even feel
that it lead to the danger for some CFS patients.
I strongly feel it is high time that something to be done in order
to solve these messed up situation.

CFS doctors and researchers had tried to separate CFS from
immune related diseases and they created huge mess.
From the immunological point of view, it seems to be natural
for people to have CFS symptoms once the immune system
was messed up. Hmmm.....

Hugs,
Rika
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10 22nd July 16:52
rkageyama
External User
 
Posts: 1
Default MED: CFS (aka Tendinitis (Rita))


This is repost since, again, MED topic was
deleted when I hit the reply button. Rika
---------------------------------------------------------

Dear All,

Another concerning and sharing.

I had got diagnosis of Chronic Fatigue Syndrome at University
of Washington in the US in 1989 (CFS onset 1979), confirmed
at three different university hospitals in Tokyo, in 1991, 1999
and 2000.
Then, I got the diagnosis with Relapsing Polychondritis (RP)
this June and July in Tokyo, Japan in 2005 (RP onset 1995).

The point is that I had 10-year "overlapped period" with CFS
and RP. (Obviously I developed typical symptoms of RP in
1995 and got diagnosis with RP in 2005. I had seen with CFS
doctors before RP diagnosis. Interesting thing was that I
needed to leave the CFS doctors to get the diagnosis for not
only RP (Rheumies), but also TB (TB specialist)... ).

The two Rheumies who gave me RP diagnosis at two different
hospitals in Tokyo were completely ignorant about CFS. So, to
my eyes, CFS doctors were more deniable about the possibility
of RP or whatever other diseases once they had given the
CFS diagnosis for their patients.

Of course, at least, RP and TB are not well known disease
(TB is not well known nowadays also) and I can not blame
CFS doctors completely with my experience only.
But, I still remember that I was frightened that the diagnosis of
my TB and RP were almost "too late" because CFS doctors'
strong denies.

Some might argue but, I feel CFS doctors have become narrow
minded more and more and I even feel it's not exaggerated to
say it's dangerous to leave these situation of CFS.
(Of course, as Rita keeps sharing her experience and knowledge,
there are lots of open minded CFS doctors but, most of the
general CFS doctors are like mine...).

What I can clearly say is that current CFS situation confuses
patients and medical doctors very seriously. And, I even feel
that it lead to the danger for some CFS patients.
I strongly feel it is high time that something to be done in order
to solve these messed up situation.

CFS doctors and researchers had tried to separate CFS from
immune related diseases and they created huge mess.
From the immunological point of view, it seems to be natural
for people to have CFS symptoms once the immune system
was messed up. Hmmm.....

Hugs,
Rika
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