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Kamlesh

Scleroderma Internal Damage

6 posts in this topic

Hello Friends,

 

Visiting after several months - sorry about it, but I always remembered this group as it has been tremendously supportive.

 

According to my Rheumatologist, my scleroderma is damaging my internal organs. I had gone through partial fundoplication surgery in 2008 and it has failed as stitches taken to tighten valve between stomach and esophagus are broken and my acid reflux is going through roof. Visiting to UCSF and they are recommending the surgery again. My lung volume has gone down significantly and that has alarmed UCSF. UCSF (University of California at San Francisco) is one of the top hospitals. Three doctors went through my visit, studied all documents as far as 2008.

 

As per their recommendation going through testing (Manometry, PH probe, CT scan, Fluroscopy, blood tests, etc.)

But, my primary issues are extreme Neuropathy pain and my pain management specialist has run out of options, and digestive system disorder.

 

I am on long term disability and do not see any signs to come off it.

 

Best wishes to all friends.


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

 

It's lovely to hear from you again and I'm very sorry to hear that your symptoms have deteriorated and you're suffering so much pain and discomfort. Constant pain is extremely wearing and can affect your quality of life such a lot.

 

I do hope that your specialists will be able to find some way to alleviate some of your symptoms and help you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Kamlesh,

 

It is always wonderful to hear from you, but I'm sorry it is because you are experiencing more complications from scleroderma.

 

Please keep in touch and let us know as things develop.  Also, check out our new Skype Chat info, and perhaps sign up for an upcoming Skype chat!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Kamlesh

 

I am really sorry to hear this, really sorry.

 

I recently gave a talk to a women's group and spoke about scleroderma, diagnosis and so forth. I made the point that the general public would be horrified to know how inept the medical field is when it comes to treating pain. I reckon most people think there's a pill for everything and that no way would someone have to live with uncontrolled pain. That would just be inhumane right? We're a civilised society, technically advanced to the point of the driverless car. No way is there nothing we can do for people in pain, I mean they put burns victims into an induced coma. Right? They dope up to the eyeballs someone terminal. Right? So there's gotta be plenty on offer for someone living with moderate to severe chronic pain? Right? WRONG! WRONG! And in case you missed it. WRONG!

 

I hope that your medical team can find a way to help manage your reflux, neuropathy and decreasing lung function. And I really do hope they can find some way of improving the quality of your life.

 

Take care.

 


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello All,

Thank you.

I hope there will be some innovations in treating Neuropathy pain. It is battle between pain relief and side effects. Intensity and unpredictability of pain reminds me of dialogue from 'Castaway' starred by Tom Hanks -- I have to keep breathing, I do not know what tomorrow will bring. It is an excellent movie 


Kind regards,

 

Kamlesh

 

 

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