Aloha Julie,
Sorry for the delay - Had a family reunion to go to.
The steroids are every other month for 6 months. An IV 5 days. Actually, the steroids helped my hands for a month after the 1st time, this last time my hands didn't have as much improvement. The steriods have helped but I personally think its taking a toll. I've asked to be weaned off the next time, because I get very unstable the following day after they take me off. I just don't think its doing as they and I were hoping.
I was happy to have the testing, skeptical at first. The Dr. was patient, and the report gave them another opinion that what I am going through is just not effecting what can be seen by a MRI, etc. It really showed where I am lacking.
It also was a disappointment too, that I am worse than I thought. The Dr. scheduled my appt in 2 - 3 hr sessions. 1 was in the morning and one in the afternoon, she could see the difference and changes of my stamina in the afternoon. Made a big difference.
Hope that helps some, sorry if I am too late.
MM
I go for a consult tomorrow. Any testing to be done, will be determined and set for a later date. I am glad to see your posts. It gives me insite as to what is to come.
Well, that's very true. While I may not be able to play puzzles as well as I used to, I'm still pretty quick thinking in the verbal world. Sometimes I get concerned because my memory is so terrible - that's really the most problematic of my cognitive problems.. so to speak!
It's not that we get more stupid as time goes by with MS, we just have a greater problem communicating. It really does NOT affect our intellect...it just slows us down. We are as smart as we ever were. Never forget that when you have those days, where you can't write the word "the" on a piece of paper or even remember off hand how to spell it or even know what it means; that means we are having a bad day. Nothing more! It's more about us verbalizing what we mean to someone else.
I'd say we are a pretty smart group. At this point in time for me, I am SO grateful for the "delete and start over" button. Whewwwww! Sometimes I DO call it the "stupid button."
Cheers,
Heather
I've gone through the ringer myself, but I don't have the results yet - that'll be on August 4th. I'm curious to know what the test said!
I had the test, because as Angela says, it gives you a baseline for where you are right now. I'm not sure where I am. I feel like there were some deficiencies, but like I told the examiner, I'm not sure how much the test will pick up.
I'm also worried about the brain. Some days I feel stupid, too. I know that I can do parts of my job just fine, and other parts are a lot harder.
I just had my neuropsychological testing done last Tuesday and got my results on Friday. Friday was a bad day because I was feeling really low about the results. I had a great deal of variability throughout the test...highly superior in some areas and defective in others. Much of this also had to do with my executive functioning.
When I first got dx'd with MS, I remember telling my boss at the time that I could handle being in a wheelchair if it came to that, but I couldn't handle my mind going. This has been my biggest struggle. I feel like I've gone from being a bright, articulate individual to going downhill from there. There's days when I feel plain stupid because I can't find the words I want and my brain turns to what I call "marshmallow brain." And to think, the day of the testing I thought I was having a good day.
I think it's good to have the testing done because it gives a baseline. Especially if it ever comes to needing disability or whatever. It's frustrating because I went to college to be a therapist, a job that definitely requires memory and executive functioning. I'm off work now because I still struggle with vertigo, but I noticed my mental faculties slipping even prior to the vertigo. I'm someone who people look to for answers, yet I can't always find where in my brain those answers are. Angela
Hi there,
Haven't seen you in a bit! Well, I have not been tested, but I'm so glad you have.
At what point in the course of MS should we have this done you think? I'd like to add this question on to your write up about your test.
Nice to see you back,
Shelly
I read your post with interest. I asked the group about a week or so ago if they thought that going through this testing was worthwhile and helpful and now your post is one more "voice" to add to the positive feedback. What was the testing like? How long did it take? I have made an appointment for the testing for next month and am a bit anxious about it.
It is interesting that you mention the finger sensory test result that how it was much improved after being on steroids just a month ago. What level of dosing were you on? Like you, I had an infusion about 6 weeks ago and saw some significant improvement in movement. I would how long the effects of the steroids would last in our systems and would they skew a motor-sensory test result like you had. These are great questions for the neurologist or our very own doc Quix to answer. Thanks for sharing your results.
Julie (Sarahsmom46)