Weird Wegs Symptoms

**Sangye** · 04-22-2010, 03:00 AM

I thought this thread might be useful to all of us, especially newly diagnosed. Wegs can create some bizarre symptoms that don't appear in any textbook. Even our Wegs docs may not recognize many as indicators of active Wegs. Let's share our weirdest symptoms.

One of my 100% accurate indicators of highly active Wegs is feeling wide awake all night and overall squirmy. I'll be sleepy at bedtime, but it's like my body won't shut off and sleep. I can sometimes get to a deep level of relaxation, but it doesn't turn into sleep. This was one of the first symptoms I had, long before dx.

The squirminess is not "restless leg syndrome." It's like my entire body has to keep squirming or flipping side to side. I'll lay on one side and can't even count to 5 before I have to flip to the other side. It doesn't make me want to get up and move around, though. I'm usually really wiped out and crave sleep. It doesn't respond to magnesium--even high doses. When the squirmy-wormies start, I know the Wegs is becoming highly active.

I can tell when the treatment is working when I can sleep through the night and don't feel squirmy.

**elephant** · 04-22-2010, 05:24 AM

Sangye, I had insomia for years and I wonder how does that affect WG? Bio? Inflammation in the sleeping cortex

??

**Sangye** · 04-22-2010, 08:52 AM

I never had insomnia until Wegs started. I always slept very soundly and woke refreshed at dawn. So when the insomnia began, I knew something was going on.

In my case the Wegs preceded the insomnia. If insomnia comes first, it can wreak havoc on the body.

**pberggren1** · 04-22-2010, 12:53 PM

I sometimes have insomnia but not very often. I don't think it is always with active Wegs with me. Once I get to sleep i usually sleep quite well.

**gwenllian111** · 04-22-2010, 06:33 PM

Hmmm. The weirdest symptom/prob i've had WG related in having an inflammed vagus nerve! Being unable to swollow, and my bp and pulse going dangerously low! Very strange. Nothing suprises me anymore with WG. If i don't feel well, whatever the symptoms, I see my rheumy. I've never heard of vagus nerve being associated with WG, but I may be wrong. Apparently, some granuloma started to grow somewhere in my neck, pressing on the Vagus nerve apparently. Interesting stuff! lol.

Hope you're all well xx

**Sangye** · 04-23-2010, 12:35 AM

They should publish a case study of that, Gwen. It's very interesting!

Another very weird symptom I have that is a 100% indicator of active Wegs (and that started very early on): Along the right side of my tongue I get a small area that is very painful. It's a little deep in the tongue, too. Feels like a deep, bad canker sore but other than some redness, it looks normal. That isn't the weird part, though. It actually affects the way my tongue works, like a neurological problem. I might be talking and suddenly my tongue will sort of spasm and torque to the side-- as if to touch my back teeth. My whole mouth loses coordination for a moment and I bite down on my entire tongue. It all happens very fast. When the Wegs is highly active, this happens several times a day.

When it first began--months before I was dx'ed-- I thought it was cranial nerve inflammation. (The cranial nerves are in the brainstem and control various areas of the head and beyond; one is solely in control of tongue function) I still think that might be the case. I love neurology and entertain myself by contemplating hypotheses about the mechanism.

I've never mentioned this symptom to my Wegs doc. I don't think I could bear the laughter.

**JanW** · 04-23-2010, 12:48 AM

I think my weird symptom was foot pain that never went away (and eventually turned into the ankle injury/stress reaction that has me limping around to this day). I woke up one morning with a sharp pain in my big toe that was just annoying and within a week it was all over foot pain. I can feel everything on every surface I walk on which is not a comfortable feeling let me tell you. I am unable to walk barefoot anymore, and it literally happened overnight.

**malin** · 04-23-2010, 05:57 AM

My two weirdest symptomes occured in the beginning of my treatment and I have never experienced them again since. :/

The first one was acute rheumatic pains in both my kneecaps, I was absolutely fine one minute, the next I was crying my eyes out from the horrible pain and I couldn't walk, sit or do anything, my knees were hurting soooo bad. It lasted for about a day, then I woke up the next morning and my knees were fine. No sign/trace of anything and no pain what so ever.

The other one, I woke up one morning and couldn't open one of my eyes (can't remember if it was left or right), it was swollen and had puss pouring out of it. So seemed like an eye infection right? The next morning, I woke up and my eye is right back to normal, no sign of anything!

**MCC** · 04-23-2010, 01:51 PM

I can't remember exactly how they put it, but I had an unusual display of Wegener's in my kidney which the doctors had never seen before. It had them completely perplexed- at one point they thought I may have cancer as it showed as a lump about 6cm x 4cm on a CT scan. They even talked seriously about taking my kidney out for some time....was 'fortunately' diagnosed so this didn't happen.