They have decided I do not have MS but have permanent neurological damage on
the right side from the chest down.  That does include the urological,
sexual, and bowel problems as well.  I have the burning, tingling and pain
associated with the neurological problems and mild spasticity compared to
some diseases but major to me (toes curl, have trouble getting on shoes,
muscles are wasting and we are having to do some quad stim and special
exercises to hopefully improve the situation.)

If my gp said it was neurological is it a big deal!  I would immediately
tell me rd (the same day as a matter of fact) and my suspicion is any rd
worth his weight in gold would take you immediately off a tnf receptor.  I
was also told with the degree of problems I had I should have had the
steroid (1g per day solu medrol) almost immediately - that week for sure.
That might have helped.  Dr. doc most certainly told me that right off and
my rd agreed.  Unfortunately due to a neuro who did not understand biologics
and did not see lesions so decided it was not a big deal this did not
happen.  In retrospect.

The upbeat attitude takes work - I have had severe RA for so long and been
through many ups and downs.  This is just another learning curve.  Ordered
the red Sienna today - first step.  Will be here within 1 - 2 weeks and then
the lift will come next!  Scooter within a couple of weeks so the pain
should lessen.  The Keppra is not making me drowsy so that is good - not
sure that it is working yet on the pain level but some of my pain control
methods are working so that is a bonus.  I bought a new mp3 today - 1 g.
The music does work at night and in the afternoon to get my body to relax
enough to do self meditation and hypnosis.  I have a wonderful place I can
take my body and mind to.  It has a gate that creaks open and opens into a
meadow with wind quietly shuffling through the tree leaves.  The lilacs,
basil, honeysuckle smells are there depending on the day.  Sometimes I can
hear birds but sometimes I just need the silence.  If I could stay in this
space I could get rid of all pain but unfortunately right now an hour at a
time is maximum.  That is okay - To anyone who hasn't done a stress
management course with relaxation techniques - run don't walk.  It was the
best thing I did for my ra.  Thought stopping, relaxation techniques,
deciding what is real stress and what is stress you make for yourself.  I
took mine through the Arthritis Society here and have a stress map I fill
out occasionally to see where my stress level is and what I can do about it
and what I can't do about it. You don't want to know how high it is now and
most I can't do a thing about so might as well smile and cry some and work
on what I can do.

Off to get dinner started now - have company so I can have a quick nap and
lie down.

Please talk to your RD.  Ritixamab would be a better match if you are having
neurological problems of any kind.  You don't want what I have now - trust
me!

Kelly