• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
JG07

Alternative Medicine

8 posts in this topic

I have to go to the pulmonologist at Univ of Miami next wednesday and I am terrified that he is going to suggest a more aggresive treatment due to PAH and ILD right now the only meds I am on are Novasc - Imuran -Zelnorm - asprin and oxygen for SOB - I had my esophagus stretched last week (no change) and I have dismotility. I need to slow down progression - it has moved quickly - and still going. But If anyone has any ideas or suggestions I would be willing to try anything.

 

Crest/Limited,Reynaurds,Sjorgens,PAH,Pulm Fibrosis, 2/07

Share this post


Link to post
Share on other sites

Hi JG,

 

I'm sorry you have so many things to deal with now. I think the best possible thing you can do is exactly what you are doing -- seeing a specialist! They can advise you regarding treatments that are proven to work, and those that will make no difference at all.

 

The thing is, the sense of desperation is what makes us vulnerable to quacks with useless potions and pills. Often that's not so bad, if we have the money to waste and provided there are no side effects -- but the devastation occurs when we pursue them and end up excluding the real doctors and treatments that may actually help a bit. There are no rapid-fire pie-in-the-sky cures -- and anyone who promises somthing like that is generally not trustworthy. In fact, many of us have some complications that need no treatment at all in various stages of development, other than a watchful eye.

 

Sometimes we want to take something, or anything!, just to relieve the anxiety of worrying over it. Since you are seeing an expert, though, perhaps you can comfort yourself with the idea that you are hiring them to help steer you through the decision-making process regarding *valid* treatments for your condition.


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.

Share this post


Link to post
Share on other sites

JG,

I'm so sorry that things don't seem to be improving. I certainly know how you feel to be taking all these meds and still not being able to run around the block. It's quite frustrating. It's good that you are seeing a pulmonolgist. Having a team of doctors taking care of their specialties is important; however, just as important is to make sure they each know the medication soup you're taking. Hopefully you're seeing a GI for the dismotility problem. One thing to remember is that one of the best things we can do for all of our symptoms is to keep moving. No matter how tired you are, try to get some type of exercise. It helps the whole body inside and out. It doesn't have to be much - just doing laundry is a type of exercise - but we need to keep moving. I put on my little backpack O2 tank when I do laundry and it sure helps.

 

Please let us know how your appointment goes in Miami. I hope they find something that can help you.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

JG,

 

I just want to send my good thoughts and wishes to you on your trip to Miami. I'm also sending an invisible package to you. It is full of bravery and courage and wisdom. Everything you need to feel in control.

 

Actually, take someone in the room with you to take notes, repeat everything back to the dr. to be sure you are understanding what he/she says as he means it. Ask for time to think things over if you need to and ask how much time you can have without causing more problems. Ask about side effects, advantages/disadvantages, what he/she would recommend for his mother/sister.

 

Good luck. Let us know how it goes.

 

xoxo emmie

Share this post


Link to post
Share on other sites

Hi JG,

 

Hang in there! YOu have gotten some good advice here. I take medication for motility problems and it really has helped. You are dealing with alot and I hope it slows down for you soon. It is overwhelming to deal with so much. Take one day at a time. I like Emmie's box. I send one also. Susie54

Share this post


Link to post
Share on other sites

Hi JG,

 

I sure hope your doctor visit to Miami goes well and you get some answers and treatment that brings you some relief! We will all be anxiously awaiting your update.....you are in my thoughts.

 

Warm wishes,

Heidi

Share this post


Link to post
Share on other sites

Hi JG! I think you got great advice and words from the gals here.

 

You say you're willing to try anything. Well, since my sclero started I have been treated by an alternative therapist (I also go to a "regular" Dr.) who does this massage that's supposed to improve the flow of energy in my body. I firmly believe this therapy, along with other measures and medications, has helped keep my sclero at bay.

 

Good luck with the pulmonologist!

 

Best,

 

Claudia

Share this post


Link to post
Share on other sites

I had an urgent care doctor recommend that I take my daughter to a homeopathic doctor who is also an MD to explore alterative medicine. He seemed to think since they have an MD, but practice homeopathy, they are more likely to combine traditional medicine with alternative remedies. I haven't done it yet, but I'm thinking about it!

 

Jennifer

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now