Tok from South Africa - Dx around 2004

[D.ap]

Hi Marietjie

I think infection .
Maybe someone else knows differently ?
Love
Debbie
White blood cell counts thru blood test can tell the following
The only thing I don't understand is how the doctors know the difference between infection and inflammation
Maybe the white blood cell counts?

http://www.rightdiagnosis.com/symptoms/ ... ew-all.htm

[Amanda]

Does he have a fever?
Or lines running from the area of pain at all?
Hot to touch?

[MarietjievdMerwe]

Amanda,
He has no fever at all. Never had. He is just complaining about the pain in the shoulder and in the hand. Sounds like a nagging aching pain. The best I can describe it.
According to my Mom (spoke to her yesterday) he is NOT going for an MRI. I tried to get hold of Tok to get the facts, but his phone was switched off. So, we are still in the dark about the tests to be done in July.

Will try and speak to him again during the week. I know he has to go to hospital again tomorrow to book his seat on the hospital bus.

[D.ap]

Hi Marietjie

Fever isn't always an indicator of infection as a have read
http://www.zocdoc.com/answers/10226/doe ... -infection

The two different infection types are bacterial and viral

http://www.mayoclinic.org/diseases-cond ... Q-20058098
Tok's immune system ,as I am sure you know, has been compromised by :

a) Having ASPS
b) having had chemo

The doctors have Tok's history, right?
White blood cell counts can be down with having had chemo..I don't know how long it takes to return to normal

These make it that much easier for things like colds, food poisoning to create infections in his body and not just his arm.
http://www.nlm.nih.gov/medlineplus/ency ... 003643.htm

They have only been giving him pain meds?
As I understand it if they can't see infection ie the right range on bloodwork and fever, then the elevated white blood cells can be thought to be elevated because of pain/stress rather than infection. Thus the pain meds are given? Make since

I think Amanda mentioned spots as that could be a blood infection and tha can be quite seious if not treated.

Hope you reach him soon for your peace of mind.
Love
Debbie

[MarietjievdMerwe]

Debbie,

I really do believe this is only done routinely. A friend of Carreen works at a private lab in town. She looked at a copy of his bloodtests and also confirmed that everything was in order.

He has been complaining about the arm swelling and the pain in the shoulder as well as in his hand.

[Bonni Hess]

Dear Marietjie,
GRRRRRRR!!! I am SO very sorry, upset, and angry about all of the inexcusable delays in Tok receiving the proper evaluation and treatment for his undiagnosed arm pain, as well as the lack of proper information which he is receiving about the reason for his supposedly scheduled MRI. I Hope that he is assertive and pro-active in asking the appropriate questions and demanding adequate answers which is essential in this difficult battle. I am wondering if there is anyone who you can contact to file a complaint with and possibly request/insist that the schedule for Tok's scans and treatment be accelerated and made sooner than July 1st?
Take care dear Marietjie and keep the Board updated as you are able.
With great shared frustration, and with deepest caring, special thoughts, healing wishes for Tok, and continued Hope,
Bonni

[Amanda]

I am so mad!
I wish i could fly him here an for him to get help!

There are a vast amount of reasons why the body will create inflammation an pain is the scream for help the body naturally puts out.

List it all even stupid things that change things.

Is it better then it was when it started?
When it started was it low pain an now high?
What happened when he first felt this?
PUSH down on the fingers on his hand an see how fast the blood re fills the nail beds is it as fast as the other hand?
Is there any numbness or burning feelings?
I would like to ask if there is any thing that stops the pain?
Medication?
A way he holds his arm or elevation?
Heat or cold?
Also, was the chemo he received on that arm.
Is there any lines that look dark?
Is there any discoloration at the site of pain?
Are there other changes now in his body that are happening like fever or dehydration since this started?

I cant go thru all the posts an see every thing my head is for some reason pounding today!

There is such a vast mount of reasons for pain an a problem like this!
If we take all the questions an replies an add then together we will do just what the doctors do get a PRACTICING DIAGNOSIS *Good doctors*

It sounds to me like that are not practicing medicine there and being armed with this information an all of us using this list an adding to it will help us to find out what this is or help him to stop this pain till they actually do what doctors supposed to do!
We will pain a picture that is a possible diagnosis like they are supposed to do!

I also KNOW we have some doctors reading this forum.. if so make a fake name an try and help! This is why you went to school

[MarietjievdMerwe]

Dear Amanda and Bonni,

The frustration is getting to me.. The moment you think it can't get any worse, there is yet another surprise.

Amanda, so sorry to read of your headache. Hope it is much better today?

I have faxed your list of questions to Carreen and will post her answers as soon as I received it.

What is very upsetting to me is apparently the wound is draining at the moment. He had his primary removed in 2012. This sounds horrific to me. This thus far is all the info I have.

Again I would like to thank everybody taking the time to reply. As I don't see Tok that often, it is so difficult to physically see what changes his body is undergoing or what type of pain he is in. Therefore I really do appreciate every question and reassuring answer from everybody.

Will always be very grateful to each and every body on this forum. I have learned a great deal in order to try and help my brother.

Special hugs to all of you.

[Amanda]

Hello
My head feels better hun ty <3

You say wound is draining? is this at the site of the pain? or is this from the surgery in 2012?

If i have to buy meds here that are over the counter an mail them i will!
Hun, if this is an infection that is draining an causing pain we need to act now!

If this is.. let me know an there are a few things i will need to know then an PO box an will send stuff for him to care for this till the doctors there do there jobs!
I wonder if doctors without boarders are there close by an he can be seen by them?
Medical teams from the USA do go all over the world... maybe there is one by you?

[MarietjievdMerwe]

Dearest Amanda!

The world needs more people like you.

Wish I could give you a great big hug right now!

Tok has got a bag full of painmeds that he uses religiously. At this stage i am of the opinion that he should be hospitalized.

According to Carreen the wound is just above his primary wound and the pain is in that shoulder, from what I understand. Could this have been an absess that is draining? But that would have shown in the bloodtests? Could this be ASPS "again"?

But PLEASE do not worry!!!

I am SURE things will change once he has seen the oncologist on Tuesday and the once the CT has been done.

HOPEFULLY this will open somebody's eyes so that he will be given the proper care. Please don't get me wrong: we have excellent medical care in South Africa. Just not in our state hospitals.

Take care dear Amanda. I am very glad that your head is feeling better.

[Amanda]

I felt the hug my dear friend an your welcome! <3

ASPS is very vascular an i would think it wouldn't be an infected tumor.. the flow thru these tumors is so vast an i would be surprised... But, i have been shocked by ASPS before so we will see what the doctor says.

The cyst / abbesses is a painful thing an yes it can burst an hurt like hell!

Tell her to keep it clean an dry as best as possible an to not cover this wound it can create more of a problem.
It must stay clean though an dry an let the body do its thing until he sees his doctor.
If he has a fever or any red lines going away from the wound he must bee seen as fast as possible.
If it is green or dark yellow in color or has a smell he must be seen right away by any good doctor that will see him.
I am not sure what side this is on an if it is the left side an there are lines please have her take him to see a doctor right away.

I am mad so mad! How dare they leave him like this and purposely draw this out! I am not sure what path they fallow but there is special places for people such as this an the doors will be wide open for them when they pass over!
Medical neglect is unforgivable! An i am in hopes someone will get a hold of this information an start to pull medical license from these quacks!

[D.ap]

Marietjie and family

I am wondering if the infection is localized
In that cause I am wondering if it isn't showing up in the blood test
A culture needs to be performed?

http://www.m.webmd.com/a-to-z-guides/sk ... res?page=6


I am not a doctor so a question to ask a wound specialist ..
Love
Debbie

[Bonni Hess]

Dear Marietjie,
With dear Tok suffering so much pain and having unexplained and concerning drainage from a "wound" on his arm, I think that he should be seen immediately by his local doctor rather than waiting until Tuesday for his hospital visit and CT scan. It is obvious that his pain and the drainage are not normal and are being caused by something which requires medical attention which should not be postponed until Tuesday. I know that it is a very difficult situation for you being so physically far away from Tok, but Hopefully you can somehow encourage Tok or Careen to contact the local doctor for an evaluation.
Sharing your concern and great frustration with deepest caring, healing wishes for Tok, and continued Hope,
Bonni

[MarietjievdMerwe]

Tok was briefly hospitalized on Saturday. Spoke to him yesterday and he had an unfortunate episode with the "wound" starting to bleed heavily and him having to rush to emergency.

There is still no explanation for the bleeding/draining of whatever is going on in that arm.

The dr on duty put in a few stitches to stop the bleeding and he was put on a IV for a few hours. That apparently stopped the bleeding. He also told Tok that he had no idea what is wrong with the arm.

In the meantime we are numb with scanxiety..

He will have the CT tomorrow morning and was told that the results will be with the oncologist within an hour. He also has an appointment with her tomorrow afternoon.

I will let the board know as soon as I have heard from Tok.
Ancxious regards.

[D.ap]

Wow Marietjie and Tok
I am so sorry to hear of you're weekend.
But it sounds like you are on the right path
Thanks for the update

Much love and hugs
Debbie