Calciphylaxis: An almost fatal disease.

[Windwaver]

On 12/2/2023 at 9:14 AM, RadX said:

oh yes, the pain… a mix of ischemic, neuropathic radiating and somatic…wonder how I lived thru rt😂

took Gaba for a day or 2 only and then off it

I've been taking that for years for my pain, think it's probably for life since doctors cannot get a proper diagnosis.

Tell me about living with pain every second of your life 

[RadX]

On 12/2/2023 at 8:14 PM, Windwaver said:

Why doctor cannot help you?

Cos appt so late… would have died by then

 

I’m trained in this area so no issue. And when the time came to see the derma, I said no need..😂

[RadX]

On 12/2/2023 at 8:21 PM, Windwaver said:

I've been taking that for years for my pain, think it's probably for life since doctors cannot get a proper diagnosis.

Tell me about living with pain every second of your life 

Sounds neuropathic and a pinched nerve 

 

 

[Windwaver]

On 12/2/2023 at 8:22 PM, RadX said:

Sounds neuropathic and a pinched nerve 

 

 

Got to take other painkillers too.

Bad news is doctors don't know where's the "faulty" nerve, just tell me live with it.

[Windwaver]

On 12/2/2023 at 8:21 PM, RadX said:

Cos appt so late… would have died by then

 

I’m trained in this area so no issue. And when the time came to see the derma, I said no need..😂

Another way is to see them as a private patient, very fast.

[RadX]

On 12/3/2023 at 3:45 PM, Windwaver said:

Another way is to see them as a private patient, very fast.

Indeed… but I din seethe need for that as this was of a different need

 

but no guarantee they have the exposure as well

 

case in point, ur issue? See pte also no conclusion? I rest my case

[Windwaver]

On 12/3/2023 at 4:20 PM, RadX said:

Indeed… but I din seethe need for that as this was of a different need

 

but no guarantee they have the exposure as well

 

case in point, ur issue? See pte also no conclusion? I rest my case

Can try steroid jabs into different joints in spine and see how that goes but it comes with high risk.

Only 1 joint at a time. Doctors are not sure in the first place, can you imagine how many times I need to go OT to just jab 1 joint at a time?

And yeah, pain is not fun when it's every second of one's life.

[Windwaver]

BTW, I feel happy for you, at least your pain's gone.

[RadX]

On 12/3/2023 at 5:10 PM, Windwaver said:

Can try steroid jabs into different joints in spine and see how that goes but it comes with high risk.

Only 1 joint at a time. Doctors are not sure in the first place, can you imagine how many times I need to go OT to just jab 1 joint at a time?

And yeah, pain is not fun when it's every second of one's life.

Wish u well pal… does seem very strange ur case

[Freeder]

Since this thread is currently active,

Pls MCFers , don’t all in hor though YEN is cheep now..
 

https://www.japantimes.co.jp/news/2023/11/24/japan/syphilis-cases-record-high/

[Windwaver]

On 12/3/2023 at 5:15 PM, RadX said:

Wish u well pal… does seem very strange ur case

2 MRIs, 1 CT and tons of blood tests/X-Rays and nothing strange pops out but pain is still there, on bad days probably need to go A&E.

Is there a possibility doctors missed something minor? Maybe I'm those super rare cases that doctors like to say when nothing can be detected?

Yes you're right, pain can be so bad sometimes respawning comes to mind 

[Lala81]

On 12/1/2023 at 5:55 PM, RadX said:

This was posterior, at the gastrocnemius

and extremely rare in post transplant patients...and the patient who succumbed, had it at the penis....damnn

the debridement of the Eschar, is as you know, challenging, and that is why i did hydrocolloids and was even ready to do NP wound tx...but needn't go that route

Hmm calf unusual location for abrasion. then yeah once it started developing sure something abnormal liao. Abx first line and probably debridement with culture when it becomes Eschar like what you said to make sure not funny crap like meliodosis/mrsa then biopsy. 

Ha even derm steel blue also say it's rare. No wonder I never hear before. 

[Davidklt]

How long did it take to recover from the whole episode?

[Volvobrick]

On 12/2/2023 at 8:21 PM, Windwaver said:

I've been taking that for years for my pain, think it's probably for life since doctors cannot get a proper diagnosis.

Tell me about living with pain every second of your life 

Now I think the inflammation and pain in some of my finger joints (specialist said aging, just live with it) is nothing compared to what you guys are going through.... Take care. 

Edited December 4, 2023 by Volvobrick

[RadX]

On 12/4/2023 at 2:44 PM, Davidklt said:

How long did it take to recover from the whole episode?

3 months

[Arogab]

Wah Bro @RadX, you ok already?? I seem to see similar thing with my friends. Does this happen on the back? 2 friends seem to have this on their back and it grows into a huge wound. Doctors have to put a pump or what to keep sucking out the liquid coming out and keep it dry. Since then they recovered. One lady friend got this and has a big scar on the leg. Now doing skin grafting to reduce the blackened skin I suppose. 

[RadX]

On 12/4/2023 at 5:16 PM, Arogab said:

Wah Bro @RadX, you ok already?? I seem to see similar thing with my friends. Does this happen on the back? 2 friends seem to have this on their back and it grows into a huge wound. Doctors have to put a pump or what to keep sucking out the liquid coming out and keep it dry. Since then they recovered. One lady friend got this and has a big scar on the leg. Now doing skin grafting to reduce the blackened skin I suppose. 

Theirs could be chronic wound and not exactly this.  Could be other factors, unless renal related . Negative Pressure holds promise for such wounds in removing the exudate thru the vacuum pump system.

 

yes, grafting is what would happen for those who can’t heal on their own.

 

not an easy condition to manage … really

[BanCoe]

On 12/4/2023 at 5:16 PM, Arogab said:

Wah Bro @RadX, you ok already?? I seem to see similar thing with my friends. Does this happen on the back? 2 friends seem to have this on their back and it grows into a huge wound. Doctors have to put a pump or what to keep sucking out the liquid coming out and keep it dry. Since then they recovered. One lady friend got this and has a big scar on the leg. Now doing skin grafting to reduce the blackened skin I suppose. 

Could be common  abcess