On the hunt for a 2nd AI

[vdub]

Remember Jack said "just because you have one bad disease, doesn't mean you can't have another"?

Well, my PCP is on the hunt for something in addition to wegs. I guess the new symptoms are pointing to several possibilities. He mentioned "neuro" quite a bit, but ruled out ALS. Most of the names were quite lengthy and I couldn't begin to repeat them. I have a whole battery of tests tomorrow. He joking asked me if I felt anemic -- apparently they are going to extract a lot of blood.

He also set me up with a PET scan -- that's one scan I haven't had yet. A PET scan specifically looks for cells with higher than normal sugar content. Apparently, that is one way to detect cancer, because cancer cells are metabolizing so quickly that they use more sugar than regular cells, so with a PET scan the cancer cells will glow. Kind of a neat process actually.

He doesn't think there is any cancer, but there is one spot in my lung that has grown from 7mm to 9mm since August. 9mm is to small to biopsy and probably too small for a PET, but he's going to give it a try. The 7mm spot has been chaulked up as a graunuloma and wegs damage, but he wants to make sure.

Also, remember my query for info on wegs affecting autonomic nerves? My PCP is in the same ball park as the other two doctors I talked to and thinks that wegs had a part in the failure of both the phrenic nerve controlling my diaphragm and the nerves controlling my heart. I'm surprised there isn't more information on this -- maybe its rare, who knows. I'm sure other things are failing right now, but too early to tell.

One autonomic nerve that might be failing or might have failed is some of the ones controlling sweat. I've had a difficult time controlling sweat and have previously chaulked it up to one of my many drugs or night sweats from the lack of a pituitary. But now I have another possibility.

Of course, I will keep you all posted with the interesting research and science behind this, but it will be slow moving. Cheers!

[Pete]

The only thing about this that's encouraging is your attitude!! Illigitimi non carborundum est (don't let the bastard grind you down)!!!

[vdub]

I love the quote, Pete! I have to write that one down!

[Alysia]

I am sorry, vdub. Not easy, to say the least. Your fighting spirit is inspiring. Thank you ♡
Once a soldier, allways a soldier, no matter where is the battle...

Thanks be to God that your doc ruled out ALS and cancer.

The sweats and the findings in the lungs can point to wg flare ?

I am going through similar process right now (hunting for another AI disease ?) but much less complicated then yours. My GI system is killing me for months now so I am doing many tests. Waiting for biopsies' results.

I wonder how many of us have more then only wg... an idea for a new poll :)

I think that maybe when it is wg active, we will have couple of symptoms in more then one system. But I am not sure.

Hang in there and please update us. Keeping you in my prayers ♡

[annekat]

It is possible that I could have ankylosing spondylitis, an AI that stiffens up the spine, among other things. I only know about this because an acquaintance has it, and is doing fine with treatment. I'm getting a new doctor soon, a rheumatologist, I think, and he will know what it is and if I could plausibly have it. It's not too bad compared to WG and some others, I think, though I don't know.....

[vdub]

We all have our stories I guess. I don't have to look very far to find someone in far worse condition than me. I'm glad I'm still mobile, still thinking semi-clearly (some would argue that), and I'm glad I haven't lost all hope for being able to do some the things I want to get done in the future.

The doctors have put some really ridiculous weight restrictions on me at the moment and that is very frustrating. I'm used to lifting 100 or even 200 pounds and they want me to keep lifting down to less than 6 lbs for the next 6 weeks. Sheeezee! All my tools, fasteners, etc are above my head on a high shelf in segregated buckets. I suspect each bucket weighs about 40 or 50 lbs. Had I known they were going to weight-restrict me, I would have moved some stuff around. So, at the moment, I just break the rules a wee bit.

[drz]

Get some help. Find a young and agile person to make your things accessible and teach them some of your skills and knowledge. Lot of young people like working with tools and things and would like opportunity to learn more. Please don't jeopardize your recovery by injuring yourself from doing some thing you should not do. I empathize cause I had the same problem after my hernia surgery early this year (2016).

And Happy New Year and best wishes for better health to you and everyone.



We all have our stories I guess. I don't have to look very far to find someone in far worse condition than me. I'm glad I'm still mobile, still thinking semi-clearly (some would argue that), and I'm glad I haven't lost all hope for being able to do some the things I want to get done in the future.

The doctors have put some really ridiculous weight restrictions on me at the moment and that is very frustrating. I'm used to lifting 100 or even 200 pounds and they want me to keep lifting down to less than 6 lbs for the next 6 weeks. Sheeezee! All my tools, fasteners, etc are above my head on a high shelf in segregated buckets. I suspect each bucket weighs about 40 or 50 lbs. Had I known they were going to weight-restrict me, I would have moved some stuff around. So, at the moment, I just break the rules a wee bit.

[Girly3800]

A PET scan will 'light' up for an infection as well. My husband had a PET scan and a large spot lit up in the upper lobe of his left lung. We all thought it would be cancer - in fact it was a bacterial infection - actinomycosis. Good news that it wasn't cancer but still resulted in a lobectomy.

[Gab122]

I haven't been on the site much vdub but just read what's going on with you. any results yet?
Sooo glad it's not als!
Wishing you the best.
God bless!
Gab
PS - don't cheat much on your weight lifting restrictions! it's probably there for a reason.

[Debbie C]

vdub,I really admire your attitude with all you have been and still going through. I know myself just the not knowing would be making me sicker. I guess mind over matter. I hope the pet scan comes back good but helps you get some answers. Drz had some great advice for you...get someone to help you get what you need, I'm sure there are some young men around there ( that you can trust...if not just get out your big guns !! ) that would love to learn car restoration. Don't hurt yourself so you won't be able to enjoy it. Take care and let us know the results :hug2:

[whatthewhat]

I've gone to a few Juvenile Arthritis National Conferences (they cover all rheumatic diseases) and was really surprised at how many people have multiple AIs, plus how AIs run in families. A couple of other moms I met had over 15!! I could be wrong but I think the statistic was with one AI you have a 40% chance of having another. :-(

[vdub]

I could be wrong but I think the statistic was with one AI you have a 40% chance of having another.
That doesn't surprise me. I suppose if you are predisposed for an AI, then many issues can crop up. It seems that the proper dx for an AI is a very thin line from one to the other, too. Just in the medium artery area you have Wegs, MPA, and Churg-Strauss. I can totally understand where someone might have 2 or 3 different AI's at the same time. I don't see how the doctors can sort things out. Must be very difficult.

[mishb]

vdub, I'm sure some of your already listed conditions are AI's, why would you want another to add to your list :razz::crying:

I have a handful of them, if you want one.

I certainly hope that they can get on the top of things soon.
drz is right - let someone else do some lifting for you, for the time being. It's not very long
If it's a pride thing, then for your sake, swallow it - Deb also makes a good point, this ban is there for a very good reason. I'd hate to see something ever happen to you :hug2: