I want to apologize in advance for the very long and negative post. I know this is actually good news. I am just feeling confused and pretty down right now. To be perfectly honest, I’m not even sure why I’m feeling so upset.
After a 4 month wait, I saw the ms specialist again yesterday. The first time I saw him he was great. He connected the lesion in my brain to most of my symptoms. He said the problems with my leg were coming from a lesion in my spine (spine is clear).
This time he was an hour and a half late, told us what a bad day he was having, and then looked at his watch, and said that he was now going to be late for a conference. I know everyone has bad days, but it was still disappointing after I had waited all these months.
He of course didn’t remember anything about me, didn’t have time to review much, and dxed me with CIS. The problems I have are residual issues from that one attack, and while better, are still disabling to the point where I am unable to work. He did say one lesion can do this, depending on where it’s located.
I am very happy it is still CIS and not full-blown MS, but at the same time I’m a bit concerned. He is an imaging researcher, and therefore puts pretty much absolute faith in MRI results. He said that without a second lesion on an MRI, he wont put me back on modifying meds (was on Copaxone for 9 months when I “had” ms). It does not matter what new clinical signs show up on exam. He did not remember that the issues with my leg (the residual is still obvious on clinical exam) began quite suddenly over a year after my first attack. There is no lesion on my spine, so I don’t know why I have these issues. He was in such a rush that I didn’t get to ask this question, and I am kicking myself about this now.
He does not put his patients on modifying meds at the CIS stage. He said that a couple years ago 1 or 2 out of 10 neuros would begin treatment, now it is 5 out of 10, and in a couple more years it will be 8 out of 10. He, however does not believe in treatment until at least one more lesion shows up, no matter what new abnormalities show up on exam. I am a bit concerned about not being on treatment now since trends in research do indicate starting meds asap (not that I am an expert by any means). I also know I tolerate Copaxone well, so starting it again wouldn’t be that big of a deal to me. I guess I’d rather be safe than sorry when dealing with this stuff, since now he and the mayo clinic have both confirmed the CIS. I am just hoping this will work out okay. I will have another brain MRI in 6 months, and we’ll see what’s up then.
He did put me on baclofen for the spasticity in my leg, and provigil for fatigue. I am unable to fill the provigil because he wrote the rx on the wrong form and didn’t specify the number I am supposed to take. The pharmacy, like pretty much everyone else, can’t get ahold of the MS center.I am not holding my breath on getting this filled anytime soon.
Alright, end of vent. Thanks to those of you who made it all the way though this, lol.
Hey Sweet Friend
I TOTALLY agree with Uppity. Is there anyone u can think of that u can see other than this guy?? I know u had such a hard time getting to this doc to begin with..and getting in with anyone...so i know this would be a huge job. Maybe u'r pcp can suggest someone new??? Maybe u can just have u'r records sent to another clinic to get a review and see what options turn up??
I"m so sorry u'r feeling down friend. I know u'r a bit lost now...not knowing what to expect and not feeling taken care of. U truely weren't taken care in this appt! Even if he's a great doc and his manner with u had been great this time, his 'plan' for u isn't a good one in my opinion. I agree...getting back on Copaxone wouldn't be a big jump and it'd certainly better to be safe and have something working against a possible second episode then to just 'wing it'!
Hang on sweet friend. I'm praying for u and will be here with big shoulders as much as u may need me. Take good care and try to get u'r mind off this and take a break for a bit...then revisit and handle this doc issue.
I am sorry. I know you were really liking this doctor. It is too bad that he clearly didn't have the time to do a good job with you this time. Hang in there. I would like to see you back on the copaxone again too.
I would love to see you find a doctor that you could really work with. I am sorry you are feeling down about this. I am sure this is very hard and upsetting. Take good care of yourself. Get those hands dirty in your garden and talk to some squirrels. Know that we are thinking of you and hoping you are finding your way out of the gloom.
Love and prayers,
Thanks for your support Uppity, Rhonda, and Gretchen!
Uppity, my doc history is so complicated at this point I don’t know where to begin. Mayo said I had CIS and to watch and wait, and if something else came up then I needed to get on treatment.
My local neuro later told me my CIS looked like it had now moved into MS and offered me Copaxone. I didn’t ask why at the time and declined the Copaxone. I just didn’t want to deal with any of it. After a “flare” where my leg went from normal on exam to having brisk reflexes, clonus in the ankle and weakness, spasms, and a bunch of weird sensations, my neuro brought up the Copaxone again. My walking was a bit affected, so this time I went on it. The neuro didn’t do an MRI at the time.
This same neuro later questioned his own dx, took me off the Copaxone, and sent me to the MS specialist I saw Monday. The ms specialist was so thorough and just great the first visit (October). He believed I had had multiple attacks at that point. However, the lesion on my spine he thought was there based on the residual stuff he saw in his exam and also my history, didn’t show up on the MRI.
The visit with him on Monday was not so good as I mentioned above. I guess I am disappointed that I didn’t get his full attention after waiting such a long time. I am really hoping that I do indeed just have CIS and it will stay that way. I also feel so frustrated that one little lesion has affected my life in such a big way. I really do my best to stay positive, but am not doing such a good job of it at present. I know I am really, really lucky, and feel bad for the whining, but I guess I am just feeling pretty confused and discouraged about things in general. I know I just need to adjust to yet another flip flop in this process. I don’t know why this is hitting me so hard…it just is and I know I need to get over it.
Thanks again for all your support.
Thanks so much! I was really feeling so desperate and alone in this, and like I had made a complete mess out of my life. Your words of understanding and encouragement really mean a lot to me.
I am now hoping I can get this whole provigil approval mess sorted out, and that this med will allow me to drive, work, and just get out there and enjoy life again.