Sticky

SCL-70 and Sine

24 posts in this topic

All true Shelley, but they are going to have to explain ANA 10x higher than normal along with very high inflammation. Keep in mind I was on Humira and MTX at the time ;)

 

For me it's not about what it is, only that it is. Folks don't want to believe something is wrong when you're very sick all the time. They believe it's all in your mind. The past six years was spent knowing something was wrong, very wrong.

 

For example, when I had a torn ACL and meniscus I was sent to PT with out so much of an X-ray. Could not hardly walk and trying to do ridiculous very painful exercises. Ultimately having an MRI was when the problem was found.

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Hi Sticky,

 

I know exactly what you mean. I went through a very long diagnostic process myself -- even at a very major world medical center.

 

It's from that experience that I can say, no matter how major the center is, if you don't happen to encounter the right doctor, they will very likely merrily conclude that it is all in your head, or you have another illness that they are more familiar with (RA, lupus, chronic fatigue syndrome, etc.)

 

I am *not* saying that you don't have the facts, the tests, the symptoms, the genetics, and the statistics on your side. I *am* saying that none of that really matters, if the doctor is not very familiar with systemic scleroderma and its myriad -- and often rather subtle -- presentations. Sometimes, even with all of that, it is *still* a waiting game for a diagnosis. However, there is one thing in your favor, and that is that males on average get diagnosed twice as fast as females with systemic scleroderma (3 years versus 6 years), which does put Hope back in your corner, especially as you've been at it six years already.

 

:emoticons-group-hug:


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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All righty then sports fans! :)

 

Sine Scleroderma and Psoriatic Arthritis is the official word. Not that its great news but it sure means a lot that the guess work is over.

 

Having some endoscopy done on Monday and GI on Tuesday. Blood tests were funky at first glance but most likely due to current meds which has just changed. I'm going to let the doctor sort that one out . :P

 

Different type of biological and no more DMARDs for now, thank goodness, due to TIA's.

 

Peace. Out.

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Hello Sticky

 

Congratulations on achieving a diagnosis and a double barreled one at that! Show off! Also I only know of one other person with sine scleroderma so, again, you're a show off!

 

Seriously, you can now get on with the business of treatment and hopefully getting better. You know what you're up against and that's half the battle as you have discovered.

 

Take care and keep posting.


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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*chuckles*

Yes, two for the price of one!

 

Thank you Amanda and yes it feels like 200 pounds -- er, kilos that is in your neck of the woods -- has been lifted off my shoulders!

 

No more fretting about what and hopefully finding some balance and with these two its up on a tight rope. :D

 

Cheers!

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Hi Sticky,

 

I'm really pleased to hear that you have a diagnosis (or two! ;) ) I do hope that your endoscopy and GI go well on Monday and Tuesday and that you can now get organised with a treatment program which will help and hopefully improve things for you.

 

Kind regards,


Jo Frowde

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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Thanks Joelf

True enough and already changing course for PsA and rather than trying old school DMARDs it's back to biologics.

Got to get the inflammation back to earth, the predisone put a dent in it but it's still in the stratosphere.

 

As for sclero we shall see. Going down an unmentionable path that worked well for me for 3 years

Of course sclero was not in the picture not even remotely thought of. I am interested to see how that plays out, good or bad its worth a shot given the success I had back then. If not then will see what's the next step.

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Hi Sticky,

 

Congratulations on your double diagnoses! :emoticons-yes:

 

I'm sure they were both long overdue. It will certainly help get your medical care back on track. Isn't it just a huge sigh of relief?

 

:emoticons-group-hug:


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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That it is!

 

They took two samples during the scope so must have found something. GI tomorrow then I'm heading home.

 

We felt the psoriatic arthritis (PsA) was for sure, my local doctor was stopped on that though, but I stuck to my guns and good thing I did.

.

Just too much going on that psoriatic arthritis could not cover.

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