He is making me feel batty, as much as he goes back and forth...
To make things worse, a lady (thank god for her) who a family member met through MS Lifelines, called me to discuss my neuro--off the record, of course.
She has experience in the area and works with neuros...she said my neuro is not very aggressive and very old school in treating ms, and she said many patients like me (who are diagnosed but not with a positive CSF) of his, tend to get less aggressive treatment from him.
He has gone back and forth with me over whether to use dmd's right away or not---once he said to think about two specific dmd's and at our next appt, discuss which one to use.
Then, at our next appointment, he suggests waiting...I feel like he is unsure of what to do. When I press him on why we are only treating the symptoms, he says I look very good currently...
She pretty much confirmed what I had suspected--that even though he diagnosed me with MS, he seemed reluctant to start DMD's--and wants to watch and see, and watch and see, as he feels I "look good" right now. He says DMD's are not always the best choice, despite what we may think.
I am seeing an MS specialist this month--he is apparently in line with the current thinking on DMD's, and I want to know a few things and get answers to the following questions:
1. Do you agree with the dx?
2. Could the mediastinal mass be mimicking MS?
3. If you agree with the dx, why is my current doc suggesting I wait and think about DMD's for months before starting treatment?
The lifelines lady said nothing I shared with her about my neuro's indecision with dmd's surprised her. She said I should see an MS doctor, specifically.
I really feel like the universe sent her to me at just the right time, because I had just resolved to ignore my m.s as best as I could, and just use the baclofen, provigil and amitrypline to deal with the symptoms.
Remind me to use the laptop anytime I haven't had my morning coffee.
The Higher Power in which I believe wants nothing but peace, joy, and love in our hearts and in our lives. Imagine what His world would be like if we could all set aside our own wants in order to first meet the needs of others.
Well, I will save the rest for Sunday. Pray that my voice returns by then, please!
Yeah, what she said! Seriously, though I am not diagnosed with anything but a big head so far, I have been trained in counseling the sick, and I agree with LauraLu 100%.
You will struggle with this disease, though to what extent is one of those things that only the Lord knows.
You will struggle with this diagnosis, but you will come to terms with it. You will realize that it is not your fault, that nothing within your power could have prevented it, and that -- from a human perspective -- sometimes stuff really does just happen, seemingly for no reason whatsoever.
I pray that you come to terms sooner rather than later. For many of us, believing in a Higher Power with plans and purposes far too great for us to grasp has been the
My belief is everyone goes through some form of this and parts of these emotions, particularly the guilt of feeling like our disease is negatively impacting those we love is hard to deal with. This problem is one of the reasons so many people with MS (over 70%) have situational depression from the cirumstances of having MS. Don't overlook there is also organic depression, caused by the damage in our brains.
IT seems it takes about a year to settle into some type ofrelationship withour MS - in the meantimes be sure to take the time to learn all you can about MS and keep learning. Knowledge really is power.
Please talk to your doctor/MS nurse about these feelings - and know you are definitely not alone.
hugs,
Laura
I couldn't believe my eyes when I read your post! This is ME, my life and exactly how I feel. I really don't know that others felt this way. I'm sorry you are going through this. I have no words of wisdom for you unfortunately but please know you are not alone. Hugs to you sweetie!