March 10, 2009
I’m sorry for not sending an update sooner…
I did not receive any actual diagnosis. I went through 4 days of physical therapy twice a day to help with my “gait” and to see if I can keep things under control in that way. The neurologist said I do not have MS. He based this on my MRIs and the “non-epileptic seizures”.
He was not interested in any of my symptoms and was ready to send me on my way the first day we were there. We insisted on trying to come up with answers and so he sent me to a psychiatrist, who after our consult basically said there is nothing going on there causing my problems.
I have been using the program the physical therapist gave me to keep my leg working, and I think it’s helping somewhat. I’ve had a couple of days when it has been very weak, but haven’t had any jerking except for very minor in my foot that goes away quickly, and some in my hand after painting Andrew’s room that went away after about a half hour.
My other symptoms have not gone away and some have actually gotten a little worse. I have been in touch with my local doctors who all seem quite disappointed in the reports they received from Mayo. The neurologist and MS specialist that were working with me before still feel that even though the neuro at Mayo says the MRI of my brain is normal, they disagree. At this point, my doctors think we have very little choice but to wait until “something big” happens in order to define exactly what I have.
I appreciate all they have done and are doing for me and know that they are frustrated in having to do things in this manner, too. My specialist did advise that I go ahead and try an additive (creatine/ethyl esther) and I have noticed a difference in the burning sensation I’ve had all over my skin, which is a major relief.
I have been able to have a fairly normal life since we’ve been home and have spent a lot of time outdoors and walking Tucker to and from school again which has been wonderful for myself and the kids! I will do my best to keep everyone updated as we wait, and continue to pray for answers.
As far as Doug goes, he’s doing great! He goes back to work full time next week. He thinks his physical therapy is really making a difference this time.
Thank you all for your thoughts and prayers. It means more to us than we could ever say!