Severe weakness

[rkm001]

Hi everyone. My Mother is back in the hospital. She had an episode before going to dialysis on Monday and during. She became totally unresponsive and had no control over her limbs and head. During dialysis they brought her blood pressure from 100 to 118 or so and she then was coherent, but still no control over her limbs. Went by ambulance to the hospital, they all suspected a strok, but the MRI did not show one.

Has anyone ever experienced severe weakness to your limbs. She is still taking Prednisone, but no Cytoxan because of low white blood count.

I am very concerned that the Doctors are not even talking about the Wegeners disease. I have not been able to get her in to a specialist as of yet. May 21st

[RCOSSIO]

You SHOULD insist that your mom's gets a kidney biospy...NOW!!!!!

[Sangye]

You've got to get her to a Weg specialist ASAP. May 21 is 2 weeks away--far too long if she's in this kind of shape. You might have to make a major stink, but it might save her life.

Did they do an EEG to rule out a seizure?

Also, since Wegs can affect the central nervous system, a CT of the head would not be out of line. A CT can show things an MRI misses (and vice versa).

Why are her white counts so low? They need to find that out. It could be due to a number of things-- none of them would be okay to ignore.

Does she still have the weakness?

[RCOSSIO]

Wow...it upsets me how some MD's take a casual approach especially with WG. I agree with Sangye...only an experienced WEGS specialist can help her. INSIST, INSIST, INSIST...time is of the element now..no need to wait!!!!!!!

[rkm001]

She has had a biopsy and is definately WG. The primary care doctor acts as if she is a routine case. The specialist is an hour drive and i am not sure she is up for the drive. If I request they refer her to the specialist would she get in quicker.

I really appreciate this website. I cannot know exactly what she is going through, but she was a healthy lady until about 4 months ago when she was misdiagnosed.

[Sangye]

For now :
You've got to get her to the specialist soon. You must speak to the primary care doc directly and say something like, "I've been researching Wegs and speaking to a number of people who've had it for many years. I've also been watching my mom go downhill at an alarming rate-- from a healthy woman to one who can barely tolerate a 1-hour drive. Because of what I've learned, I have good reason to believe she's in danger of serious injury, maybe even permanent or life-threatening. I want her to be seen by a Wegs specialist ASAP and I need your help to make that happen. I'm sure you agree that waiting 2 weeks could have a devastating outcome, and neither of us wants that to happen."

The doc will read between the lines and hear "I better do this, or it will be my fault if something goes wrong." I've found this to be the most effective at "inspiring" a reluctant doctor to take action. It's a shame, but it works.

For later :
The primary care doc either needs a good talking to about Wegs, or it's time to find a new one. Wegs is a lot of things, but never routine. Not in the best of cases! S/he has to have it in mind (and their staff as well) that your mom is not ordinary and must be seen faster than the other patients when necessary. Wegs symptoms can mean serious and possibly permanent damage. They can be life-threatening. Many folks on here can attest to the fact that they were nearly dead and still didn't look as bad as you'd expect.

Keep us posted. We've all been through this type of thing before, so we've learned some tricks.

[Jack]

I hope they are keeping an eye on her renal function, this may not be one of their routine tests as I found to my cost. I was in terminal renal failure before being diagnosed and had very few symptoms other than not being able to move much.

[rkm001]

Mother is still in the hospital. After i recieved the reply from Sangye, I called the primary care doctor and asked to be referred to the specialist. I had called the specialist nurse and she stated they could not get her in before May 21st withour a doctors request.
Low and behold the PCD is at a conference, wont be back until Monday. I will try to get him to make the request then.
Meanwhile, Mom will have to go to skilled care as she can not stand up. she can move her legs and arms but has very limited strength.
The Kidney doc did start the Cytoxan again today at a lower dose of 25 mg.
Your words are very helpful to keep me plugging away.

[Sangye]

Have they figured out the source of the weakness? If they don't know for sure, you can demand that they keep her in the hospital and continue to investigate. It's not okay for them to just send her off to skilled nursing undiagnosed. Clearly something has happened, and what if it continues or further damage is done? Which specialists have evaluated her? You can also ask for a second opinion from the same type of specialist (ie, another neurologist).

It's good you're staying on top of them-- you're the only voice your mom has right now.

[rkm001]

The nephrologist, PCD and the Neurologist. The Nuerologist has been trying different things like cardiac enzymes; a test that shows something that has occurred in the heart, EKG, MRI. I am very pesimistic about the heart and feel the WG is the real culprit behind all her troubles.

I believe her age of 76 has a lot to do with how prompt or concerned they are.(sarcasm)