Hey all, new member here

[Psyborg]

I am not officially diagnosed yet, but after finding out that my PS-3 was so elevated the research led me here. I've had a cough since March, and in May I suddenly started having pretty intense joint pain and bad blood pressure. I'd actually been on cruise in March and that led them to think I might have Malaria, which was oddly the only disease they thought of that fit all the weird symptoms.

At the end of May I ended up in the Hospital where they could not figure anything out. At that point my Hematologist (seriously low RBC) thought I might have Polymyalgia Rheumatica. Finally getting to a Rheumatologist that would listen to me, I was told that was pretty much not a good diagnosis, but that I had something Rheumatological going on which led to the test that finally found the elevated PS-3.

I am scheduled to go to Cleveland Clinic next week and hopefully get started on real treatment for this. I have learned alot browsing the forums here and appreciate everyone's sharing of info.

[drz]

I am not officially diagnosed yet, but after finding out that my PS-3 was so elevated the research led me here. I've had a cough since March, and in May I suddenly started having pretty intense joint pain and bad blood pressure. I'd actually been on cruise in March and that led them to think I might have Malaria, which was oddly the only disease they thought of that fit all the weird symptoms.

At the end of May I ended up in the Hospital where they could not figure anything out. At that point my Hematologist (seriously low RBC) thought I might have Polymyalgia Rheumatica. Finally getting to a Rheumatologist that would listen to me, I was told that was pretty much not a good diagnosis, but that I had something Rheumatological going on which led to the test that finally found the elevated PS-3.

I am scheduled to go to Cleveland Clinic next week and hopefully get started on real treatment for this. I have learned alot browsing the forums here and appreciate everyone's sharing of info.

they usually confirm the diagnosis with a biopsy, like from kidneys if you have kidney involvement or lungs if they are involved. I read there are some similar diseases that mimic WG but aren't.

[pberggren1]

There are good docs at the Vasculitis Clinic in Cleveland Clinic. Dr. Langford and Dr. Hoffman are the top docs.

[Psyborg]

I actually don't have lung or kidney involvement. Mine symptoms are trachea and sinuses so far. The trachea being the more uncomfortable so far. I suspect maybe some issues I've had over the last couple years could be related, but not really sure.

[Sangye]

Hi Psyborg, welcome. Funny, another member just talked about the Borg yesterday and here you are.

It's wonderful that you're starting off at CC. You'll be in safe hands there and best of all, I won't have to put you on my "Must Nag to See a Wegs Specialist."

[Psyborg]

Thanks, it was this forum that led me to head to the CC. I'm hoping everything turns out well there.

[pberggren1]

Can't beat CC. And being part of the Borg you will just assimilate someone that does not cooperate with you.

[Psyborg]

Sorry, thought of another question/issue

I was diagnosed with cirrhosis of the liver last year after a gall bladder removal. My gall bladder had ruptured and completely scarred itself off from the rest of my abdomen. They don't know if the gall bladder caused the liver issues or not. (Now I wonder if it may have been related to WG maybe, though I showed no symptoms until recently).

Anyway...my dilemma is I know that most WG immune suppressants are bad for the liver. Anyone else had to deal with this twist.

Further on this I actually had gastric bypass because they suspected I had the liver issues due to being overweight. Now I'm having trouble staying at a healthy weight...and the gastric bypass causes me problems with a whole other bunch of drugs that it limits my intake on.

I feel like I've spent the last year chasing one health issue to have another crop up. And they seem to be operating in a vicious circle

Anyway...if anyone has had similar issues I'd love to know how they doctors have handled this.

[DEE]

Good luck for Tuesday Psborg . welcome to our group DEEx

[elephant]

Hi Pysborg, so glad your going to the Cleveland Clinic...I go there too. I had my Gallbladder removed in march. I feel your pain I had in the last 5 years I had 8 surgeries and now going for cataract surgery in the fall and I am only 45 yrs old.