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I’m always wanting to go to any one of my doctors and hear “you are doing great, we don't need to do anymore tests or change your medications”. But that is only a dream.

 

I saw my gastroenterologist Monday; my choking is getting worse, the part that opens and closes is getting smaller and the part in my throat between c4-c5 is getting harder. The funny thing about this is, it is not the little uncoated pills, which go down better than the coated capsules. An appointment is being made to see a speech therapist. I was also told I can open the capsule and crush the others, except the pain meds and the one I can not say, let alone spell!

 

A good friend tells me to always remember to say it is what it is. My son is now living with me; it is so nice to have support in the home.

 

I wi!I be keeping my thoughts about everyone that has scleroderma.

 

Quiltfairy.

 

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Hey lady - I'm curious as to whether your doctors have ever suggested you trying IV Ig infusions?  Gareth's rheumatologist was straight out of Johns' Hopkins scleroderma center and said that is the latest trial for scleroderma.  It got brought up a couple of years ago, when he was having esophagus issues.  Her comment was *he's already getting IV Ig infusions for his immunodeficiency. IV Ig would be the next step if the Plaquenil stopped working completely.*

 

Curious as to if any others have been recommended IV Ig therapy for scleroderma.  It may be only a trial test at Hopkins, too?

 

Take care, everyone.

Margaret

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Hi Quiltfairy,

 

I'm truly sorry to hear that you're suffering so much at the moment. I do wish I could offer you more in the way of comfort and as Sweet has said, you're incredibly brave, considering all the horrible symptoms you have to bear each day, with little or no respite.

 

I can give you a couple of our ISN hugs, though.

 

:hug-bear::hug-bear:

 

My very best wishes to you,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Happy, happy birthday!!!  :happy:  I hope you were able to enjoy some little fun yesterday - maybe a nice meal out at a favorite restaurant or your son made that favorite dinner?

 

Take care; we're all thinking of you.

Margaret.

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15 hours ago, quiltfairy said:

Thank you on the good day.

I made it 64 years today.

 

Happy belated birthday Quiltfairy.

 

Your post did make me wonder though how many sufferers are surviving until their 70's and 80's or even possibly 90's.

 

Do we have any data relating to forum membership on this?  I can't remember whether I gave my DOB when I joined or not.

 

On that subject, it would be interesting if we could compile some demographics of our membership, e.g. sex, age range, location, etc.  What information do we actually have? (Subject to GDPR compliance of course).

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Hi Dimarzio,

 

We do give members the option of including their date of birth and location when they join; we are very careful, however, not to give out any personal information on the Forums as per our guidelines.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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