That time of year for another neurologist visit. You would think it would be boring since all I am treating is my seizures. Since I have not had any seizures the medicine is working and I should just be in and out. That was not the case. I am not interested in treating MS at this time but the neurologist take is upon himself to do some neurological tests, etc., maybe so I get my moneys worth. 😉
As I posted in a comment. I am not all better but I have remained remarkably stable. As I have noted before I am much better than I was when I started and I am no longer having relapses, etc. The Lyme treatments I took made a significant difference, but I eventually did not notice any improvement. On the other hand I do still have lesions on the brain. If the lesions are caused by MS, Lyme, or something else I do not know. At this point they appear to be silent lesions and I am neglecting them for better or worse. For quite a while now I have not been taking any treatments. I, of course, still see my neurologist for treating my seizures and he still disagrees with how I am handling my Lyme/MS treatment; some things will never change. For now it will be more of the same as far as treatment.
Best wishes to all of you as you seek answers and are looking to get better!
After the results of the MRI I got a call from my neurologist’s office with the results, albeit a little slow. It was his medical assistant and she gave me a brief synopsis of “it is bad.” She also added that the neurologist wants me to resume Rebif (aka whatever I was taking before). He was aware that I had quit to get treated for Lyme (he did not approve). In reality I had quit before I knew about Lyme. I had grown to hate taking Rebif, and it is not like it does not have any nasty side-effects (cancer?).
I started Rebif when I was diagnosed with MS because it was the “best” drug at the time. I was very optimistic about this treatment. As time progressed and many MRI’s later the Rebif was not working real well. My first neurologist ordered a blood test from Athena Diagnostics to see if I had developed antibodies to the interferon. No antibodies. I continued to take Rebif; in hindsight I do not know why I continued taking an expensive drug that did not work well.
The test from Athena was a waste. It provided no useful information and the test was “expensive.” The test should not have been expensive the core cost was $1000 with a $200 charge if you paid cash, but they said they would bill my insurance. The claim was rejected because they did not fill it out correctly. I called them and they said they would re-file correctly; I never heard from them again. Blue Cross would have paid 100% for that test if they had done as they said they would; they lied. I got a call from a collection agency wanting the $1000 years later. I offered the $200 cash price. They eventually gave up calling. They can get the $1000 from my cold dead hands.
Damn Rebif. Damn Athena. Damn their billing. Damn Lyme.
I had my annual neuro visit. This time I was curious about the loss visual contrast sensitivity. The last time I saw my LLMD, and he tested my contrast, he put me on two scoops of Cholestyramine. That is one nasty drug (definitely need to stir it in warm water). The CSM did not seem to make much of a difference, but did have a positive effect on other things. I dropped the CSM. I went to see an ophthalmologist at my optometrists recommendation (he did not think my vising corrected well enough). The ophthalmologist without testing my contrast sensitivity deemed it normal aging (how the old fool came to that conclusion we may never know). My neuro did not agree but offered no suggestions. He said I need to go see a neuro-ophthalmologist.
What makes the contrast problem different from every other problem is that it is constant. The Lyme/MS issues would/will come and go, but this does not change. Do I have another doctor in me?
Well had another neuro appointment today. At least I am doing well, but that makes me like going even less. The only reason I mustered the energy to go was so that I could get order to make sure my liver is hanging in there. I certainly don’t want it to fail on something not fun like Rebif! Eriksgirl asked why he doesn’t write anti-depressants. After a brief discussion he said he does, but does not write Wellbutrin. Of course his medical assistant did not make that clear. Apparently, this stems from the original Wellbutrin had a seizure rate of 1 in 200 as compared to the antidepressant norm of 1 in 2000. He said this has supposedly been fixed in the Wellbutrin XL (what I was taking), but he is biased against them now. Of course I would have happily tried something different had the MA made that clear. Of well, hopefully no more Solu-Medrol and the need for antidepressants.
As a bit of background my feet remain numb and my legs a little weak. Well in a telephone conversation tonight if my neuro knew about my continued problems. After making some joke about barring him being psychic then no. I said there is no point calling him because I’m not going to take anything (read Solu-Medrol) for this. I emphasized that the side effects are way too bad (and my thinking is that exacerbations are part of MS – save the Solu-Medrol for when you really need it!) I explained my horrific attitude that there is no making me happy and I treat everyone badly. The point of all of this was the next comment which was something to the effect of “doesn’t knowing that it is the Solu-Medrol help you to get over the feeling.” Truly a statement made by someone who has absolutely no clue, and that is good because I wish I didn’t know. I tried to explain it in terms of waking up in the worst possible mood x1000, but alas that doesn’t cover it. The things that MS opens your eyes about.