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rkm001
05-07-2009, 12:32 PM
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
05-07-2009, 01:23 PM
You SHOULD insist that your mom's gets a kidney biospy...NOW!!!!!

Sangye
05-07-2009, 01:28 PM
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
05-07-2009, 01:48 PM
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
05-07-2009, 08:19 PM
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
05-07-2009, 10:19 PM
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
05-07-2009, 11:51 PM
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
05-08-2009, 11:04 AM
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
05-08-2009, 11:13 AM
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
05-08-2009, 12:16 PM
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)

Sangye
05-09-2009, 12:41 AM
Right now you're uncertain about what they're doing and why, which is causing you to fill in the blanks with your own conclusions. You might be right, or you might be misreading them.

The only way to tell is to have an open discussion with each doc. Find out :

1) What have they ruled out and how did they do it.
2) How certain are they that those conditions were ruled out (eg, some tests are 50% accurate)
3) What else might be going on, and how can they find out
4) What's next?
5) Do they feel she should get a second opinion in any area. (Hard to ask, but necessary)
6) What would they do if this were their own mother?

It's a good idea to bring a small voice recorder or take notes. It's to make sure you have all the info straight, not to trap them. Let them know-- most docs are fine with it, since they know it cuts down on future questions!

Doug
05-09-2009, 04:55 AM
I believe her age of 76 has a lot to do with how prompt or concerned they are.(sarcasm)

You have had excellent suggestions up to this point, but Sangye's 6th point may be the critical one here. Don't be afraid to call your mother's doctors on this point. Be frank with them, but respectful.

Many people in this forum suffered debilitating losses because of doctors doing the wrong thing at the time or because there wasn't a proper concern for how fast WG can wipe you out. If you can't bring yourself to ask the 6th question outright, mention the forum and note the amount of concern WEGGIES had about your mother's care. I know we have a different perspective on treatment than all but the best specialists.

The recorder, too, is an excellent idea because you will forget a lot of what the doctors say otherwise. You might want to transcribe what they said once you get home, as questions will come up, ones you didn't think of when getting overloaded by the "doctor talk"! My heart goes out to you while you deal with your mother's illness and all the vicissitudes she is going through. :)

Doug
05-09-2009, 05:03 AM
When I was in treatment at University Hospital-Denver, they did an ultrasound on my heart as well. I don't know if that was proprietary software in their ultrasound or not (the technician operating it said things that make me think it was), but they were able to measure my heart in real time. It was weirdly fascinating seeing the wall of my heart change in thickness as it contracted, and finding out that a heart in congestive failure shows the fluid buildup in the wall tissue. Incredible! This type of testing may be available where you are, too. The heart is the one organ you don't want damaged for sure.

Sangye
05-09-2009, 05:16 AM
Doug, are you referring to an echocardiogram? It's an ultrasound of the heart that shows all the structures in addition to the blood flow (which shows up in red and blue). It's part of the annual routine testing for Weggies-- or should be, if a doc isn't doing it. I have no heart involvement but my docs have always insisted it should be done on every Weggie annually.

Jack
05-09-2009, 05:40 AM
I had one done in the early days, but since then, I've survived on the occasional ECG, scan or Xray.

Doug
05-09-2009, 05:49 AM
Sangye- May be...! I'm not sure, but it certainly sounds right. The unique thing about the one I had five years ago was that it was in real time, if I understood what the technician indicated was different about the equipment capability there compared with most ultrasound testers. Again, it was five years ago, so I may be full of it, too! I haven't had one since. I do remember seeing the blood flow in and out of my heart. Up till this time, I couldn't sleep on my left side because I'd heard my heart pumping, which creeped me out! After all I went through with WG, I was just glad to hear that reassuring sound!

Jack- I passed with flying colors, had no heart involvement, so that may be why my doctors haven't had me have another one. Ultrasound tests are my favorite tests! Warm goop, spread over your skin, mmmmm! Of course, anything that doesn't involve needles is OK by me!:)

Sangye
05-09-2009, 05:52 AM
Jack, an EKG only shows the electrical function of the heart. An x-ray yields minimal info about the heart-- shows if it's enlarged. CT or MRI would show more detail about the heart structures, but not the function. An echo is the only test that shows the real-time function, but it would not take the place of an EKG, since it doesn't show electrical function. For Weggies, the echo is the least intrusive that provides the needed info.

Jack
05-09-2009, 06:04 AM
Yes, I understand that the echo test gives different information, but I don't seem to have any symptoms of heart involvement so I'm not too worried at the moment.
To be honest, it takes all my time and effort to tackle the things that I do have symptoms for. My current mission is to get to the root of my walking problems. I'm seeing a Neurologist at the moment and have just had an MRI of head, neck and spine. Next come the electrical nerve tests. Best guess at the moment is that it is the steroids (again!) and we might have a go at reducing my dose a bit when all the results are in.

Had one of my regular appointments at the renal clinic today and my Consultant called me in to see him. He told me that he was retiring and wanted to wish me luck. He's been keeping me alive for over 20 years now! I'll be sad to see him go, but he has built up a well respected department so I should be OK. :)

Doug
05-09-2009, 06:31 AM
I had the EKG, too. Of course, who amongst :confused: us hasn't?!

pberggren1
05-09-2009, 06:51 AM
What's the difference between and EKG and an ECG?

Doug
05-09-2009, 07:00 AM
They are the same, as best I can tell. On a hunch, I typed in Elektrokardiogramm (my wild guess at German for electrocardiogram!), and that is what they call it: Elektrokardiogramm = EKG. With a little searching, one might find that's where the test originated. If so, I'll update this later.

Jack
05-09-2009, 07:00 AM
Both the same I think.

Doug
05-09-2009, 07:18 AM
ECG timeline - History of the electrocardiogram (http://www.ecglibrary.com/ecghist.html)

If you look at the history of it, you'll find British, French, German, Duitch, American, Australian, etc. etc. involvement in the development of this tool, so why "EKG" vs. "ECG" isn't clear. Curious!:eek:

Sangye
05-09-2009, 11:42 AM
Yup, just as you're discovered they're the same. I know what you mean by busy with all the current stuff, Jack. Wegs really keeps you hopping. I hope they can figure out your walking issue. I don't remember your symptoms....

Jack
05-09-2009, 05:46 PM
I have a huge amount of muscle wastage (legs like sticks now :() and pain in my knees and feet which does not seem to be in my joints or even in my muscles. :confused:
I now can't stand up from sitting or get up stairs without pushing up with both hands.
Upper body affected to a much lesser degree.

rkm001
05-09-2009, 09:02 PM
What type of muscle weakness are you experiencing. My Mother cannot get up or walk since this last episode. Is this tied to the Wegeners? Should I be even more demanding at the referral to the specialist. She has had a Nuerologist look at her, but she stated she was stumped as to why the severe weakness.

Sangye
05-10-2009, 12:09 AM
Jack, it sounds like classic steroid myopathy. I'm sure that's their main guess??

If so, the reason for the foot and knee pain is that they are stabilized by ligaments, which become too stretchy with adrenal stress (Pred effects). Do they pop a lot and/or feel loose? Your upper extremities wouldn't be affected as much because muscle weakness there is less noticeable than in the larger muscle groups, and the joints are under less weight-bearing stress.

Jack
05-10-2009, 12:45 AM
Yes, I think that the long term steroid use is the problem once again. My knee and ankle joints do feel unstable and I'm afraid of them giving way. Together with the severe Osteoporosis, I can't afford for that to happen and try to be extra careful.

rkm001 - sorry, can't help you there, my problems have occurred during the last couple of years after nearly 25 years of Wegener's, but everyone has different symptoms as I'm sure you know.

Sangye
05-10-2009, 01:01 AM
Jack-- can you get to a pool? Some gentle exercise (emphasis on gentle) can help maintain some muscle and keep your bones stronger, too. Walking (forward, backwards and sideways), marching in place, etc.... Very few repetitions. It would also help send proper "balance" signals to the wt-bearing joints and ligaments, so they learn not to wobble as much. Just a thought.

Jack
05-10-2009, 02:12 AM
I know you are right. I just need to overcome my natural laziness where exercise is concerned. :rolleyes:

When I was fitter, I practiced both yoga and karate for many years so I know what I should be doing. I'm feeling a bit worn down by everything at the moment and having a job to get motivated. Not good, I know. The less you do, the less you can do. Perhaps I should try a bit of meditation first.

Sangye
05-10-2009, 02:20 AM
LOL....If it's any consolation, the pool feels so good-- you can move without fear of falling, without pain, and without feeling like you're locked in a limited range of motion. It doesn't feel like exercise--it's pure joy.

(Although I do love exercise, and not having been able to do anything all this time has made me nuts)

pberggren1
05-10-2009, 08:10 AM
Here's another question. What's the difference between and Electrocardiogram and an Echocardiogram?

Derek
05-12-2009, 07:16 PM
Hi
I think that an Electrocardiogram is when they put all the wires on your chest and you get the graph read out. An Echocardiogram is when they put vasaline on your chest and role a senor over to get the report. I think it called Cardiac ultrasound.

Derek

JohnL
06-09-2009, 08:39 AM
That Cytoxin is BAD stuff - knocked me for a loop - couldn:t even undress without help - Dr put me on cellcept - much better now

Doug
06-09-2009, 11:24 AM
That Cytoxin is BAD stuff - knocked me for a loop - couldn:t even undress without help - Dr put me on cellcept - much better now

We created a heavy metal rock band in honor of Cytoxan:

Cytoxan and the Bunny Rabbits from Hell.

Coming soon to a venue near you!

Sangye
06-09-2009, 12:38 PM
Did you mean to a "vein-ue" near you?

andrew
06-09-2009, 07:25 PM
Did you mean to a "vein-ue" near you?

*Badoom-tish*

You forgot to add: I'll be here all week, tip your waitresses, try the veal. :D

jola57
06-12-2009, 01:22 PM
ooh, entrails talk, liver and kidney pie anyone?

JohnL
06-13-2009, 02:15 AM
This is to much for an old man like me - Liver and kidney pie - EGAD

Doug
06-13-2009, 09:55 AM
Eeeeeeeeeeeeee! Urp! Yes, I feel my stomach evacuating! Too English! Too English!



I'm reminded of this quote from Samuel Johnson 's dictionary:

Scotland

Oatmeal has a long history in Scottish culinary traditions because oats (http://en.wikipedia.org/wiki/Oat) are better suited than wheat (http://en.wikipedia.org/wiki/Wheat) to the short, wet growing season. Therefore, it became the staple grain of that country. Ancient Scottish Universities had a holiday called Meal Monday (http://en.wikipedia.org/wiki/Meal_Monday), to permit students to return to their farms and collect more oats for food.
Samuel Johnson (http://en.wikipedia.org/wiki/Samuel_Johnson) referred, disparagingly, to this in his dictionary (http://en.wikipedia.org/wiki/A_Dictionary_of_the_English_Language) definition for oats: "A grain (http://en.wikipedia.org/wiki/Grain), which in England is generally given to horses, but in Scotland supports the people." His biographer, James Boswell (http://en.wikipedia.org/wiki/James_Boswell), noted that Lord Elibank (http://en.wikipedia.org/wiki/Patrick_Murray,_5th_Lord_Elibank) was said by Sir Walter Scott (http://en.wikipedia.org/wiki/Walter_Scott) to have retorted, "Yes, and where else will you see such horses and such men?"[5] (http://en.wikipedia.org/wiki/Oatmeal#cite_note-4)

Perhaps eating the offal was what contributed to the rise of the British Empire: soldiers, sailors, marines, and airmen trying to find an edible cuisine. Har! (p.s. I know that England supports edible food now, just as Americans have refined their tastes, so please don't report me to Emeril or such like!)

Doug
06-13-2009, 09:56 AM
Did you mean to a "vein-ue" near you?
Ha! Aw, YES!