My last visit to the neuro was extremely odd. He did his usual exam with some hummmm, then looking thru the files. made me walk a fairly far distance. Never did that before...usually just in the room to the door and back to him. Said I had clones and forget the name, but my hands were blue and cold. Starts with an R. (I remember some things and forget a lot ) Then he sent me for an MRI. Just had one 6 months ago. He said to start thinking about something other than Rebif. When I was leaving he scheduled me for a visit in 2 months. I usually see him every 6 months.
I went back with my MRI. He said that Rebif was not helping me and wanted me on Tysabri. I asked if something was wrong and he said no, just time to change and the quality of your life was not being helped by Rebif.
I also now have a tumor. He showed me the lesions and the tumor but did not comment. I DO feel much worse and walking is almost impossible but he said no.
Is he trying to keep my hopes up?
I try my best not to read other people’s minds, and this is my advice to you. Direct communication is the best way to resolve your current concerns. There are really three possible explanations for the situation you describe in your question:
- The doctor meant nothing by his/her comments and was possibly distracted by some issue unrelated to your case. This happens to all of us; we just have a bad day and do not realize the potential consequences until told later by our patients, friends or family members.
- The doctor has some level of concern about your MS and is awkward in communicating this concern because he presumes this will have a negative consequence. Alternatively, he/she may think that telling you about his/her concerns will open a can of worms that he/she is not able or willing to address at this time. Either way, this type of a response clearly backfired and only increased your anxiety.
- Your prior interactions with your neurologist have left him/her with the notion that this type of vague response is required; maybe he thinks you do not respond well to bad news or have expressed a desire not to know the details in the past. This type of overly paternalistic response can create the exact problem you describe.
Sometimes you just need to rip off the band aid and get the information up front. I would suggest that you request a meeting with your neurologist to discuss this anxiety provoking episode face to face. You may even want to send him/her the exact question you sent to me on this web site. He/she may be totally unaware of your reaction and feel that their is no particular cause for alarm. In this case # 1 is the best explanation.
If there are causes for concern, put your neurologist at ease and tell him/her you are prepared for a open discussion. Make sure you bring someone with you to take notes and bring a list of prioritized questions, since it is often difficult to remember details of a discussion or forget to ask important questions when you are upset. Tell him/her you want to know the options; if there is significant uncertainty expressed by your neurologist, respectfully ask for another opinion to help him/her out and to resolve these uncertainties.
I hope this helps