This is new to me.

**onatreetop** · 10-13-2009, 01:35 PM

I was diagnosed the end of June and began the meds asap. It has been a rollercoaster ride. But finally, after the monthes have gone by and I lost the energy of the teenager I had in the begining I have been looking for more answers.

I am forty-one and there has never been another case found in my family history. The levels the doc was hoping for are all there and good but I am still on all the meds. I was told that because it was found early that I wouldn't have to stay on the meds more than four monthes but.........I am still on and begining to feel the tired strain of 4 kids, 5 including the husband and the meds.
I have gotten some of the flow back into my hands and the other areas have not changed or progessed. So the meds are working. I am greatful that my very aggessive doctor did every test under the sun to find out I had this and not carpul tunnel or arthritis. My doc has only seen twelve people that have had this and eleven where to far along to help. All that he could try and do was make them comfortable. That was scary to hear.

Everything that I have read averages the meds at about a year? Then maintenance if ness.. Still go for blood work and catscans and mras , etc. and am starting to wonder how much radiation I can take in this short time? I still have my own small business and work it alone a few days a week.

Everyday is different but the same. Hoping for my energy to come back.

**andrew** · 10-14-2009, 06:02 PM

Energy is that slippery beast that always seems to stay just and inch or two out of kicking distance

The more we force ourselves the further away it becomes although it sounds like your life is forcing you rather than the other way around! The more you look after yourself the more chances you give yourself of getting some more energy. Does your family appreciate what you're going through?

The amount of time you're on medication will be something that only you will experience. You've probably heard this a million times (no exageration!) but everyone is different. Some of us go through several months of medication and can exist without or with minimum med after that. I for one am not one of those people

I have been on varying meds since 2003 with no sign of any change in that situation. I find (and this is just my personal experience) that the more I concentrate on finally kicking the meds or even going into remission, the more depressing it is and the more unlikely it seems. Weird yes but true. No one can accuse me of being normal! I keep trying to feel better i.e. healthy every day. The more normal/healthy I feel the less everything else seems to matter. Easier sad than done for many but nevertheless, taking the focus off kicking the meds or going into remission can only be a good thing.

The radiation from all the scans, xrays MRI's etc is pretty much negligible. I've had millions (no exageration) and I'm not glowing yet

Seriously though, you have more to worry about by staying out in the sun too long and getting sunburned

You certainly sound like a person with a lot of drive. I can appreciate how you feel wanting that get-up-and-go back again. What kind of business is it that you run?

**Sangye** · 10-15-2009, 02:31 AM

(Andrew, the radiation from medical procedures is definitely not negligible. You might be thinking of dental x-rays or the very occasional extremity x-ray. CT scans are extremely high in radiation)

I'm the same way when it comes to digging my heels in and insisting that I'll be in remission, off meds, whatever. It always backfires. I think it's just that any time we harden our minds about something, it hardens the circumstances, too.

Getting dx'ed with Wegs as a chiropractor, I came into this with a very hard-edge opinion about how wrong meds are. And I was going to get myself off them way faster than normal, you can bet that! What happened is I got sicker faster with more and weirder complications than normal. With a lot of therapy I've developed more of a "bend instead of break" attitude. Even when things go wrong it doesn't get me down as much--not all the way to the bone, anyway. And I can see a light at the end of the tunnel. There's a way to move forward with motivation and not force.

Doug · 10-15-2009, 02:49 AM

Long term, we all may find cancer is our new BF for a while. I've often felt WG won't kill me, but something (disease) that WG made possible by weakening my immune system or because of WG treatment (Cytoxan- increased bladder cancer risk, for example) will. I don't worry about it. Of course, I haven't had that much radiation exposure after the first year. That could take the "smug" out of me reasonably fast if I had had more exposure.

**Jack** · 10-15-2009, 02:58 AM

Bet it will be something you are not expecting that gets you! Post to let us know when it happens.

Doug · 10-15-2009, 07:29 AM

Ha! I suspect I'll be toasting in Heck before I figure out I'm dead!

**onatreetop** · 10-16-2009, 12:07 AM

I do try to take one day at a time. Some days are much better then others. I have found what you say to be very true about the will to get better then going to the doc and him saying see you in five more weeks. It is very depressing when I hit that speedbump. I believe he is just trying to give me hope but...poop. I have become more aware of my symtoms and sometimes think that allergys are part of the WG. I have always had them. But conjestion has always effected my hearing and sinus. I forgot to mention that my mothers family has a hugh medical history. She doesnt have WG but there isnt much else she doesnt have. I had my first TIA in the spring. I figure if I am on her path I am about ten years earlier than her with symtoms for cur. art. dise. I was diagnosed with arth. in my hips and back in my early twenties.

I have my own cleaning business. So energy is required. Again, somedays are better than others. I know that most of my hand pain is aggrivated by the work but the pay is wonderful for hardly any time at the job. Most of the people I work for I have been cleaning for 5 to 12 years. You could say that I am a part of there families and houses. It took me 2 years to find work that allowed me to be home when the kids were and still make some cash. Now they are all in school and I try to work as much as possible. Things have slowed down of coarse. I am after all a lux option.

The urolgist appt.went okay. I thought I had caught a stone frag after the litho. but I didnt. It was setiment from our well water. oops. He wants me to drink a min. of two quarts of water a day and take 2000mg of vit. c. It was that or three more meds, no thanks.

I try not to act sick and I just keep moving. So............my family doesnt really SEE that I am not well. They just see a tired mom trying to keep up. I am a person who would rather laugh at everything rather than cry. Crazy? Yes , it is the only thing keeping me from going insane! Once in a while I do get overwelmed. It seems to happen about once every three monthes than I pick myself back up and get moving again. I do that for me and my family because I have found that when I feel like poop, the world around me turns into poop.

Thank you all again. It is comforting to know that there are others going through the same frustrations that understand, Kristi

Does anyone overheat the way I do? It can be 45 out and I am sweating.The swelling in my face is only once in awhile but it is like wearing a neon sign. I have made everyone aware fof my situ. Them being worried about me I had too.

**onatreetop** · 10-16-2009, 01:34 AM

I found out that a catscan , depending on legnth of time, is equal to 750 regular xrays, min.. yeppy!!

**Sangye** · 10-16-2009, 02:07 AM

I'm not sure where you got that number--it's way too high. No one would survive such a radiation blast, much less repeated ones.

Chest x-ray = 10 millirem radiation
Chest CT = 580 mrem.
So a chest CT is the same radiation as 58 chest x-rays. One CT scan is no big deal. Repeated CT scans to the same body area are not good. And if they use contrast dye, the radiation exposure is higher.

It's good to know this, because doctors will often order a CT just for the heck of it, often to cover their butts. Many times they don't realize how many you've already had. You should keep track and remind them.

I've had the same obstinate ER doc twice at Hopkins. Both times she's insisted on ordering a chest CT angiogram (uses contrast dye to show the blood vessels in the lungs) to rule out blood clots, even though my blood clotting levels show that there's no way I could form a clot and I don't have any symptoms of them. (I've had a ton before so I know)

I've had to argue with her both times. Not only is it much higher radiation, but each time they use dye, you're closer to possibly developing an allergy to it. And, for an angiogram they have to shoot the dye much faster than usual so they need the IV in a good vein. I have major vein issues and IVs are a nightmare. Because I know these things and know my body, I've refused to have the angiograms both times. A regular CT was warranted, with regular contrast dye. She was furious, but I'm the one left with the consequences. My Wegs docs later told me I was right.