Jan 102015

I Feel much better than the Neuro says I am

I had an MRI at the last visit and Eriksgirl noted that it was different, my hands bent differently, etc. My neurologist said he could not comment without a MRI to see if therre were changes in the brain causing the change so off I went. When I asked all he could say about that is your MS is progressing. think that was his way of saying I do not have a clue and blame something I have been diagnosed with. The safe non-answer. 🙁

Now we get to the glass-half-empty Neuro vs. glass-half-full (me/Eriksgirl). He was very displeased with there being new lesions in the brain. I was pleased there was not an aneurysm from my kids! 😉 We then proceeded to discuss drugs for a while, he heavily prefers the injections. He then said than I need to get on a drug before a lesion puts me in a wheelchair. Later Eriksgirl said she was thinking he pulled a violation for jumping straight to wheelchair rather than a reasonable progressing disability. That seems fair to me and especially true based on past visits.

We also had a talk about Lyme, which he mostly dismissed. I have tested positive for Lyme so I at least had it at one time. He said he could be wrong and was willing to refer to someone else to look at other causes of my lesions. The person who he was going to refer me to was of course a specialist in MS. Pursuing that seemed a lot like going to a Ford dealership to have them discuss all the makes and models out that could best fit your needs, and then you are little surprised when the best one is a Ford. I had to decline that offer as I had in the past.

I left without picking a drug, big surprise, and I told him I would get back with him.

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. 😉 Continue reading »

Sep 122010

It is making the news that imaging contrast can be dangerous. As to the recent complaint making the news this is nothing new. I picked one of the agents, OmniScan, and a similar warning came as early as on the December 2007 label: “Acute renal failure has occurred in patients with preexisting renal insufficiency. Use the lowest necessary dose of OMNISCAN and evaluate renal function in these patients .” Must have been a slow news day.

Also, and what is not in the article, is that gadolinium is extremely toxic in its pure form. The drug companies bind gadolinium to another compound to make it safer and so it will leave your body quickly. Obviously contrast is not something you want to be taking. Looking just at OmniScan long term health effects (i.e. cancer) were not studied so it is hard to tell if it has long term health effects. Regardless, gadolinium based contrast is probably not a great drug for anyone to take. As Eriksgirl noted when I was talking to her no one is getting an MRI for fun, it is for something serious. In the end it becomes one of those necessary evils.

Jun 232010

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.

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.

Jun 022010

Eriksgirl went for a MRI today. Over the phone they had told her no breastfeeding for 48 hours because of the contrast. She thought this sounded wrong based on her experience working at an imaging facility. The American College of Radiology actually found that breast feeding is safe with contrast. Additionally, Hale’s Medications and Mothers Milk says the same thing.

At the appointment Eriksgirl made the “mistake” of saying she would not stop nursing at check-in. This resulted in a 30 minuted confrontation with the radiologist about nursing. Eriksgirl brought up his College’s position to which he replied he did not care what they thought. Eriksgril ended the argument by saying she would use formula. She decided that would get her in the tube and she was not there to argue about drugs. It worked.

All of the Colleges have some bad policies (ACOG, AAP, IDSA, etc) but as a rule doctors should probably follow their colleges best practices. The ACR had a reasoned position. Did the radiologist have a reasoned position (if so he certainly never shared it), or was it more of that is what he had always done. I think we have too much of a “that is how we have always done it” mindset in medicine, and maybe that is why Colleges have bad policies that are too slow changing (*cough* IDSA *cough*).

May 262008

Meeting with the LLMD went pretty well. He said he was happy that my vision problems were not optic neuritis, but he did not go into why. I was not much in the mood for there is a better side of this then, but I need to ask at the next appointment.

We started by going over the MRI report, and discussing the visit with the neurologist. He agreed with me holding off on the Rebif, and definitely agreed with no to the steroids. He said that everyone who has come to him who previously had a MS diagnosis has gotten better. He added that there are definitely some people being treated for MS but have Lyme; but that is not really news.

The majority of the visit focused on adding IV Rocephin to the treatment mix. His ideal for the Rocephin is 2g twice a day for 4 days and then off for three days for six months. I did three months with a PICC line so six months can’t be that much worse. This will be in addition to the Minocin and the Flagyl that I am currently taking.

Since I see a doctor out of state the bigger issue was that I needed to get a local doctor to oversee my home heath, etc. My family practice doctor, the one who initially started running the tests for me, graciously agreed to oversee my local care.

To be continued …

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 …

May 082008

Since my last MRI was at the hospital, because of my seizure, we went back to the hospital; the idea being that they can compare findings from the last MRI. As a nice bonus their imaging facility was separate from the hospital; which I am sure is to present more of a private imaging center feel. The big difference from where I normally go was that they wouldn’t let me wear my clothes into the MRI. She said that the zipper shavings from my jeans get into the magnet and ruin the images. I’m skeptical and very irritated as I’m changing into a hospital gown and pants. I can also listen to a CD at the private imaging facility, but that’s not an option here.

Reading the radiology report is somewhat depressing with all of the lesions. I try to think that the focus of my Lyme treatment, up until the recent change to Minocin, was focused heavily on the co-infections and not on Lyme. I am doing better, and feel better; why all the lesions? I will be seeing the LLMD soon to see what he thinks about my vision, and now the MRI results.

To be continued …

Sep 192007

As a little background I spent 3 months in PA being treated for the Lyme, etc; but more on that another day. Regardless, after 9 days of waiting (5 persistently trying, 4 giving up) I finally got a phone consult with the doctor. During the wait I stopped Levaquin because I could not get confirmation from the Lyme doctor that it was safe in light of the seizures (the drama and irritation surrounding the delay are not worth going into).

Moving on, his diagnosis was that the seizures were caused by demyelination (lesions) which was caused by Bartonella (and the Bartonella toxin). Seems reasonable since my neuro thinks the seizures are caused by a lesion too. The Lyme Doctor thinks that within a year the lesions will heal and the EEG will return enough back to normal to no longer need drugs. For now he wants me resuming Levaquin, but on a lower dose (exactly why I wanted a call-back).

He thinks Bartonella (probably limiting to Bartonella with neurological involvement) carries about a 20% incidence of seizures. Of the types of seizures Tonic-Clonic (Grand Mal) are the least common; lucky me. The Lyme Doctor said he has Petit Mal (Absence seizures); which he thinks we saw one day (and we might have). He added that the absence seizures are the most common for Bartonella related seizures. He also said that had I gotten a SPECT scan, like he had wanted, that probably would have shown the abnormalities that lead to the seizures and he would have put me on Depakote (the drug he takes for his seizures) preventively. First, I would probably need something better than a SPECT scan to agree to start taking anti-seizure drugs preventively; maybe with an EEG, but that would probably require the neurologist agreeing too. Secondly, the reason he said he wanted the SPECT scan was to check the blood flow in the brain; which we can assume is impaired and I assumed, probably correctly, that the SPECT scan was going to be used as a tool to track progress. Had he mentioned this reason maybe I would have gotten the SPECT scan; though an EEG would probably have been better and more effective (not that I am suggesting getting an EEG preventively). I personally think the SPECT scan is his scan of choice, and that reviewing my old MRI images would have been more than adequate. Especially since I have had lesions where he suspects the seizure is starting.

On a side note, as we were going over my seizure clinical history today we covered the hospital neurologist. This neurologist was insistent that based on my EEG that I had epilepsy my whole life. He was certain that I had definitely had seizures before, but maybe they were just staring spells. We assured him that was not the case, and there had been no seizures. He did not believe us. At this point he had basically called me and Eriksgirl idiots, and/or liars. One has to think that absence seizures are awkward and obvious as you don’t respond, etc.; while you may not think seizure then it would be memorable when asked about them later. With his winning bed-side manner he actually thought that I might come to see him for my seizures after I got out of the hospital. Apparently, we are not as big of idiots as he thought.