My Neurologist recently changed my medication from Imuran to CellCept. Can anyone give me some feedback on this? Good move or not?

I recently have had times when I will just be sitting there and my legs will start to feel cold (my lesions are in my T-6 thru T-11) my upper body will feel fine. But then they will continue to get chilled and I even have some pain with it. They will feel very cold but warm to the touch. It last for an hour or so and it doesn't seem like the blanket I put one has much effect. Just wondering if any one else has felt this way. Another interesting chapter in the life with NMO.

I know this is based on spinal cord injury, but in a

sense, when we have had NMO for a while, it is like having an injury to the

cord. I found something like this along time ago. I was glad to relocate it.

Hope it helps some.

href="http://www.spinalcord.uab.edu/show.asp?durki=21621">http://www.spinalcord.uab.edu/show.asp?durki=21621

Gracie


 


Gary has had scaling and itchiness for some time.

Basically it is around the scalp line, sometimes in the scalp, and it is always

in his beard / mustache and around it. He even gets in around his ears and

inside them. A while back he was dx'd by a dermatologist as to having intense

dermatitis.  The internist the other day told him that is looked like

psoriasis to him and has him seeing a dermatologist next Thur.  Anxious to

see about it. We have noticed that Gary's tends to flare with the NMO. Not

always, but if the disease kicks in, his skin already has broken out. Now his

doesn't itch that much. The skin gets a little red, real rough, raised up from

his other skin and then scales off. Steroids use to stop it, but not as much

now. Will update everyone on this as soon as we know what we are dealing with.

Gracie, I hope you can get some help. Don't know if this did or

not.


amy and gary clark

Every time that I have my Rituxan infusion, within a short time I have a bad

Psoriasis flare.  This makes perfect sense to me as NMO is B Cell mediated

and Rituxan depletes B Cells, while Psoriasis is T Cell mediated.

Right now, my scalp is really bad and the topical treatments aren't working.

Over the last year, I've lost over half of the thickness of my hair, and my

scalp is extremely itchy (I even scratch it in my sleep).  The injectable

medications are out of the question since I'm already on Rituxan.
Is anyone else dealing with Psoriasis and if so, what medications are you

using?
Grace 
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I've been having a weird issue.  My blood sugars have been abnormally low and now I'm getting dizzy right at the end of my workouts.  I'm on prednisone tapering down over nine months.  Anybody have that before?  I really don't think it's dehydration because my water intake hasn't changed and neither have my workouts.  But, on the plus side, I'm starting karate next week. Kiii yaahh :)
 
LOL

From Caring Bridge.

Written by Lisa McDaniel

The last 3 weeks have been a tremendous battle for Collin. There have been several times when we thought it was the end of the battle for him, but he is still here with us. It has been heartbreaking to watch him struggle for breath at times. He has times where he has very long pauses between breaths, times where his heart rate has been in the 30s or up over 100, times where his blood pressure has been extremely high. Through it all, Collin is still fighting to be with us. His body is very tired & worn. His body is slowly shutting down. He mostly sleeps now & we just try to keep him comfortable with meds. He is our Super Hero. The hospice nurses are here everyday. We have wonderful nurses & they already feel like part of our family. The whole staff at New Beacon has been very kind & caring. We appreciate them all so much and for their care of Collin & our family.

We will be getting more bracelets soon with a new Super Hero logo on them, so look for those very soon!

Our friends have graciously put together a Fundraiser/Sing/Supper for our family. It will be Saturday, Feb. 25 at Choccolocco Community Church. Spaghetti Supper will start at 5, singing at 6. Groups singing are: Clearvision, Crystal River & Hope's Journey. For more information, call Metha Dover 256-605-1033 or for information including donation information:

https://www.facebook.com/events/342490542440904/

Thank you so much for checking in on us. Please continue to keep us in your prayers as we continue to walk this path. Pray for peace for Collin and for his pain & suffering to end.

I have severe osteoarthritis in my right knee and the 2nd orthopedic doctor I've seen has said I really need a total knee replacement. The problem is that this is on my GOOD side since my bad NMO weakness and spasticity is on my left side. I don't think I could do the rehab, plus who knws hat major surgery would do to my NMO.

So now I decided to get some intense PT for my knee (most painful PT I"ve ever had) and work with the therapist to see what she thinks about surgery. Of course, I'd consult with my neuro, etc. and pray for wisdom.

Anyone here have any experiences with arthritic knees or surgeries or anything else that might be helpful. Thanks for your responses. Kathi

Yesterday I spoke with Michelle. She is currently still hospitalised. She did not have plasmapheresis yesterday as her fibrinogen level has been runnning low. She'll be in the hospital for a while yet, but is in good spirits. Please remember to keep her in your thoughts and prayers.

Grace

We finally got in to see the internist here in our

town. He spent over and hour with Gary asking questions and such. That day, his

temperature was 97.6. We didn't think too much about it because for some time

Gary's temp has run low.  After discussing things with the doctor and

looking on the internet, Gary's new symptoms and some we didn't really

recongnize, seem to be pointing to a bum thyroid.  Lots of test going on to

rule out other stuff, but the thyroid could be a lot of his problems lately, of

course, other than the NMO.  Gary is retaining fluid really bad now, even

on fluid pills, he has had significant hair loss that has been going on for

years. We just attributited it to getting older. Very dry skin, sleep disorders.

He had insomnia for a couple of years and now has bouts of wanting to sleep more

often. Brittle nails, yeah, I put that one on age too.  Steriod use and

lots of it, all the other meds, could have done some damage. I'll let you know

anything we find out. You know, it is not enough to look at just your NMO, but

you have to watch out for so much other stuff that stems from the effects of the

NMO on the body. I know many of you have a list of docs you go too.  We are

going to join up with you I guess


 


amy and Gary clark