Devics????

Hello,
I talked with a lady who has symptoms much like mine and she was finally dx'd with Devics.  My dad knows her husband and he put me in touch with them by e-mail last year.

She was a very sick lady here in our local hospital.  She has two disabled children and I have four, we have a lot in common.

Her vision was the first thing to be affected.  ON.  This was five years ago.  She was originally dx'd with MS and went on Avonex.  She just kept getting worse.

After this last hospital stay she was sent to a Chicago doctor and was dx'd with Devics.  She is now doing better.  

She is now able to walk with her walker.  She told me she had basically no brain lesions.  I am not sure about spinal lesions.

Devics is one of the things my new neuro is checking out with me.  I guess the blood tests and LP should help with that.

Having had ON twice might too.  But my ON was in the same eye both times.  I never lost my vision to black but I do show blind spots in my central vision on my Vision Field Tests which were not there before.

I had a t-spine MRI 2 years ago that was ok.  Never had a lumbar though.  She said it was in her lumbar area where the Devics was confirmed.

Something interesting about her is she can lift her foot to her knee to get her shoes on and she can lift her leg upwards while in a sitting position, yet she can not walk.  I can not do either of those but can still walk if I am close enough to something to grab incase of falling.

With this loss of bladder control I am having now I am wondering if it could be Devics.  Since I had my night time loss of control episode I have noticed the loss of daytime urgency.  Can't tell I have to go at all actually.

I have been off of DMD's since January.  I don't know if that would cause symtoms (symptoms) to pop back up or not.

I called the nurse at the neuros office on Thursday and I didn't mean to but I just started sobbing.  I have been worried before but I have been trying to roll with the punches.

But I have never had anything, except for ON, that I could not find a way around.  I haven't lost control of walking or the use of anything.  But losing bladder control is a very emotional thing.  Or it was for me anyway.

so I told her what was going on and she said my test results were starting to come back in.  I told her how bad my back has been hurting again since the last doctor told me to get off of the neurontin.

I went from 2100mgs a day to 900mgs a day.  My back was hurting so badly I could not sit or stand. It felt like I had a major major work out!    Now that my neurontin is back up to 1800 I am doing much better.  

My hurting is not a sharp pain like anything is out of place but a horrible stiffness I guess.

I see my doctor in 3 weeks.

[Udkas]

Hi there,
I just wanted to send you hugs and say that I know how you feel, bladder problems are horrible, they can isolate you socially, it is humiliating when you are only a young woman and you lose function of your bladder, I remember once I lost control in bed too and it just humiliated the hell out of me as both my hubby and myself had to get out of bed change the sheets etc., I just wanted to crawl up in a hole and die at the time but he was amazing and very understanding and it was our secret until now.  

I have had bladder urgency too, but there are drugs than can help and there are continence therapists at the MS Society etc. that might be able to offer help.  Please make sure you tell your neurologist as they are used to dealing and hearing about these kind of problems all the time and you may need to be referred to a urologist.

I have or had up until two weeks ago been on Vesicare and that has helped me with bladder spasms and loss of urine, urgency etc. but it has created other problems, but I think I might need to rethink and go back on it.  

Devics is usually quite nasty and according to my neuro it is quite rare mainly affecting Japanese (Asian) decent, but of cause there are exceptions.  It can be tested by at the time of LP and by bloodtest which is 70% accuracy. People with devics or (NMO) usually have optic neuritis apparently in both eyes and transverse Myelitis, spinal lesions, I asked my neuro about devics too as I had abnormal VEP, abnormal field tests and had palor of my discs, my previous neuro thought although MRI never confirmed that I had ON and my symptoms at the time would have suggested that but I don't know if my current neuro thinks this.

I didn't mean to make this reply about me (with my bladder etc.) but what I was trying to say is that you are "not alone".  I hope you get some answers soon.  I love the gabapentin, as I have lots of pain with my TM but apparently that is common with spinal lesions too.

Take care, i hope you get some help and some answers. You have been going through a confusing time.
Hugs
Udkas.