New to WG. My story or the beginning of.

[Joyce3692]

I was normally fairly healthy but in 2012 I kept getting small illnesses. Nothing you would think anything about. Then around Sept/Oct I started having problems with my hearing. I thought at that time that it was very ironic because I was in the middle of my American Sign Language 2 class and here I was not able to hear. The class helped ease some stress because at least I could communicate if my hearing loss became full. I went to the Dr and he punched a hole in my ears to drain. Still had no idea of any major issues with my health. I then scratched my eye and it would not heal. Dr. thought I had an autoimmune issue going on but again no connections made. This went on for about 4-5 months of just not feeling well. I ended up having to drop out of College with just 5 classes to go; just had no energy. Then in April I ended up in the hospital 2 x with phnemonia. No one yet made any connections to WG at this point. They sent me home after a week in the hospital then one week later still sick. At this point rheumatoid arthritis set in big time. During the middle of my exam with the RA dr she said you are going to the ER. I ended up in the hospital for 1 month. I got there, did test and they found that my kidneys were shutting down. 3 days later my lungs filled up with blood and shut down as well. This was in May 2013. I am now home and have started back to work part time this past month. On all kinds of meds, chemo, predinson, was at 80mg day but Dr is starting to step this down so I am at 30mg now. This is a scary illness but if not for my family support, I would not have been able to pull through. I live alone now, long time boyfriend (12 yrs) couldn't handle the extra work he would have to do around the house since I can't right now. But that is okay, things are getting done, just not as fast lol. Only main problem I have right now it trying to get my leg muscle back into shape... have none since laying the hospital bed for so long. One good side to this... lost 25 pounds. Have a long way to go but have not given up yet.

[drz]

Welcome. Hopefully the worst is over for you but it takes awhile to start healing and slowly recover some what. Younger people in good health seems to recover quicker but it will feel way too slow so patience is essential.

[mishb]

Joyce3692, I am so glad you have found us.

WG totally sucks and whats worse is the ongoing stories we hear of doctors not diagnosing correctly.

I'm glad they finally got it right, but now the damage has been done.

I hope you start to feel better soon and don't worry too much about the housework just yet. Just worry about YOU

[Barbara N]

I was normally fairly healthy but in 2012 I kept getting small illnesses. Nothing you would think anything about. Then around Sept/Oct I started having problems with my hearing. I thought at that time that it was very ironic because I was in the middle of my American Sign Language 2 class and here I was not able to hear. The class helped ease some stress because at least I could communicate if my hearing loss became full. I went to the Dr and he punched a hole in my ears to drain. Still had no idea of any major issues with my health. I then scratched my eye and it would not heal. Dr. thought I had an autoimmune issue going on but again no connections made. This went on for about 4-5 months of just not feeling well. I ended up having to drop out of College with just 5 classes to go; just had no energy. Then in April I ended up in the hospital 2 x with phnemonia. No one yet made any connections to WG at this point. They sent me home after a week in the hospital then one week later still sick. At this point rheumatoid arthritis set in big time. During the middle of my exam with the RA dr she said you are going to the ER. I ended up in the hospital for 1 month. I got there, did test and they found that my kidneys were shutting down. 3 days later my lungs filled up with blood and shut down as well. This was in May 2013. I am now home and have started back to work part time this past month. On all kinds of meds, chemo, predinson, was at 80mg day but Dr is starting to step this down so I am at 30mg now. This is a scary illness but if not for my family support, I would not have been able to pull through. I live alone now, long time boyfriend (12 yrs) couldn't handle the extra work he would have to do around the house since I can't right now. But that is okay, things are getting done, just not as fast lol. Only main problem I have right now it trying to get my leg muscle back into shape... have none since laying the hospital bed for so long. One good side to this... lost 25 pounds. Have a long way to go but have not given up yet.

How did you manage to lose weight on the amount on pred. If I am on 10mgs I gain 10 kilos

[Reetsky]

Hi Joyce, your story is very similar to mine. I have four grown up children (3 live close bye) but only one of them (who now lives with me) can cope with this illness. It's a strange one. Your close to death one minute and everyone is there for you but the pace of the illness and the length of time it can take to stabilise can leave them pretty bored and thinking well you must be getting better so you'll be ok. My youngest daughter is a Star as she helps me when at my lowest, looks after her own toddler and attends college too - and she is bi-polar! There's a place in heaven for her for sure.

[Alysia]

welcome Joyce.
I hope you will soon feel better.
If you get the correct treatment at the begining, you can beat this wg easier and get into remission. I was unlucky with this....
but I was very lucky few months ago to find this amazing forum, with all the kind and caring friends here

[annekat]

Welcome, Joyce. I'm so glad you found this forum, as I don't think I could get by without it. It is so typical for us to go through a period of the docs thinking we have other things before finally dx'ing us with Wegs. Your case is a little more dramatic than mine, with your month in the hospital; I only had to be in there overnight. But if not for the smart internist who was overseeing me there, no one might ever have suggested Wegs! And I had to take it upon myself to get a septum biopsy from my ENT for a dx. We have to be proactive with this disease. I'm glad you are doing better, lowering the pred, and starting to work again.... there is a light at the end of the tunnel. I'm much, much better after 2.5 years of treatment, and you will be, too. Keep us posted.

[annekat]

How did you manage to lose weight on the amount on pred. If I am on 10mgs I gain 10 kilos

I think it is normal to have appetite loss in the early stages of Wegs, especially when faced with hospital food. And it might take awhile for the pred to kick things into the other direction. But I certainly do remember when that happened! All I could do was lie in bed, sit at the computer, stand at the stove to cook, and eat! I usually ate sitting at the computer reading the forum. I imagine Joyce will experience the pred effects in full before long, if she hasn't already.

[Joyce3692]

Most of the weight came off while in the hospital. But the only weight issue I have with the predinsone is a nice big "moon" face. My face looks like a big pumpkin. lol. and the pred makes me want to eat everything. Fortunally I have had no other weight issue with it. Lucky in that since.

[gilders]

Yes, I also lost a LOT of weight whilst in hospital. My stomach couldn't even accept food through a tube (up my nose, down back of throat, into stomach). I would constantly puke up the tube. I would be choking on all this tubing that would curl up and get stuck in my throat. I would have to pull on the tube from my nose and keep pulling so it all came back out from my nose.
In the end I was on some very expensive formula that had to be kept in the dark and was drip fed direct in to my veins.

The first thing I could accept orally was Nestle Build Up drinks. The first solids were Monster Much crisps, noodles and Mc D's regular hamburger. Due to my weight loss and inability to eat I was encourage to eat ANYTHING that I could manage. Unfortunately as a began to achieve remission I struggled to stop eating and pilled a lot of weight back on. I managed to lose it all again, but after relapses and deterioration in my health, I have struggled with my weight (I eat a healthy diet, but don't/can't do much exercise).

No matter how ill I get, the last thing to happen to me is loss of appetite. My wife knows I'm having an exceptionally bad day when I don't feel like eating.