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.

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 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 …

Oct 122007
 

Sad and shocked to see a resurgence of Lhermitte’s Sign last week. In fact I think it has been a couple years since the last time I had this problem/sensation. Making matters worse I think this was the worst that the Lhermitte’s has ever been; at the worst I could barely move my head without sending shocks down my spine. On the plus side I am on the bitter end of it, and currently I have to try very hard to activate the sensation. I guess nothing like an irritating cervical lesion to give you the warm fuzzies about your treatment.

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.

Dec 282006
 

The latest MRI radiologist report has been posted. Not the more interesting read, but not that much of an upper either. Of course they missed a scan of the spine, and I am guessing that “axial T2 fast spin echo sequence” = FLAIR (which I believe is a type of T2 scan) since that one is missing from the report (and is the one they tend to like for MS). The Neuro said he would call them and have them do the scan, but have not heard from them yet (maybe time for another reminder call). On the other hand it has been almost a month since the original scan; hopefully the Myelin has significant repaired.