Aug 242012
 

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. ;-)

I probably invited invited a much larger discussion because I asked his thoughts on the Canada study that < href="http://blog.thesmithlife.com/?p=1344">Interferons (aka Rebif) are worthless. He said quite a few patients had brought that study up, but he had not read it. Very disappointing; I thought that was his job. He gave a talk about why Rebif is the best choice. I know everybody has a preferred bottled water even though it is just water; is looks like Rebif may be the drug equivalent of that and he had nothing to say! :-(

Then we discussed Tysabri. He thinks it is a great drug. I think arsenic will also fix all of your MS problems, but thats just me. He thinks you need to be the right candidate for the drug and if so he will refer you to another doctor who will handle it. He did acknowledge that even under ideal circumstances the longer you on the drug your odds off death increase. Basically no more than two years of treatment. What does two years of treatment buy you in the bigger picture?

Last on the discussion list was the oral drugs. Of those we only discussed Gilenya. He noted two things. People who are taking injections were not leaving for an oral drug. Interesting because there has been a lot of interest in oral drugs. Or does it speak to the added risks with the oral drugs albeit work better. That was not discussed. The other thing we discussed about Gilenya is that your first dose is given at an infusion center where you can be monitored. Basically doctors do not have room to monitor you and if you had problems while waiting in the waiting room for hours they are liable. The drug company’s solution make another group liable hence the infusion center; at least that is more comfortable while waiting. He also noted Gilenya reduces your white cell count. He had one patient that took her count really low, but by other metrics it was okay. She fell and required surgery. She then proceeded to not heal and get an infection. He said he did not know if Gilenya caused the not healing/infection but it was quite likely. She had to be removed from the drug. Fortunately, it is not another death story but another example of the drugs causing problems. :-(

Lastly he wanted me to get an MRI. It would be interesting to see where I am at, but I am not interested in throwing my money at academic questions. He said if I still had a large lesion he would refer me to a MS specialist, the one he uses for Tysabri. I am not treating MS so he is going to refer me to a specialist? To be fair I am not doing anything. I’ll think about all of this tomorrow. :-)

Sep 022011
 

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!

Jun 222010
 

After refusing an MRI last year at my annual neuro check-up I decided to get one this year. I suppose it was unfortunate that I did not have an MRI last year to see if those years of antibiotics paid off with the MRI scan; I certainly feel a lot better. Too late now. I have been having some problems so I was not looking to go in and get a perfect MRI. Due to where it was done, and their policies, I could pick up a copy of the report early. Prognosis: five new lesions on the cerebral cortex. This was significantly worse than expected and a bit of a downer. Eriksgirl is very motivated to get me back on the right track again; so no doubt I will be getting back on treatments regiment soon. Contemplating a new doctor.

May 092008
 

Still waiting on my appointment with the LLMD, but while waiting I have the follow-up with the neurologist about the MRI. Surprisingly this was a relatively short visit. At my previous visit he said that he thought there is a lesion in the visual cortex (or something in that area. I didn’t take the best notes) that is causing the blind spots. At the previous visit he drew a picture (which I should share) of where he thought the lesion would be located. At this visit, and based on the radiology report, he said there is definitely a lesion in that area causing the problem. I do not begin to have enough neurology knowledge to understand the radiology report so I will have to take his word. On the other hand it seems somewhat reasonable since there are many other lesions in the brain. After his diagnosis he proceeded to take out a textbook to show where in the brain the lesion is located. The quick brain anatomy lesson was interesting, but even with his explanations the lesson was way over my head. ;-) Strangely, he did not discuss steroids (Solu-Medrol); which saved me from the hassle of telling him no. Overall I would say that this visit was worth the $25 co-pay.

To be continued with the LLMD visit …

Dec 192005
 

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.

Jul 142005
 

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.