Saw my neuro this afternoon. The bad news is that I have 2 to 3 more lesions. (He did not agree with the radiologist about
one). he felt there were only two new one. None of them were active. So I now have about
9 lesions in the brain and at least one on my spine. The burning pain in my forehead/head is neuralgia and follows the path of a nerve. He increased my neurontin by 300 mg (up to 2700 mg now) and did not say one word about
my klonopin prescript
ion other than asking me if I was taking it.
He also suggested I try taking my baclofen at lunch and after dinner. I have been taking one in the morning and evening.
He had also already put in a call to the ms specialist I saw in St. Louis to ask for a phone consult. He also suggested that I go back there and is arranging an appointment. Oh, I guess the good news is that I passed the neuro exam with flying colors (relexes, poking with the sharp pin, hand/eye coordination, balance, and walking). I actually was not annoyed with him today, and was pleased that he thought I should go to the ms center. He mentioned riuxan (which really scares me) and imuran as possible treatment options, but wants to see what they suggest in St. Louis. I understand why he wants me on something due to the increase in lesions.
I drove home in tears, but I am doing okay now. For awhile I have been avoiding the idea I may be progressing, but now reality is facing me again.
Diagnosed April 2007
Started betaseron -- May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)