30-June-08

Last week on Thursday I had my next appointment with my neurologist. It is safe to say I didn't leave with a whole lot of more knowledge than when I went in. It was basically confirmed that since my Lumbar puncture showed 'nothing' it keeps me from being diagnosed as 'clinically definite MS'. And while it is clinically probable MS, it is currently a CIS case, which is just a fancy term for 'You have MS although it isn't quite bad enough for us to really treat you as an MS patient yet'.

I was frustrated that I couldn't just be done with the whole questioning thing, but it cannot be anything else from what we've seen so far, so until I get worse, I'm kind of on my own.

On my own is not really too bad of a place to be right now. Julie and I are going to meet (long distance) with Dr. Brouse in Oregon. We sent off my blood and urine samples to him on Friday so he can run some 80 tests on it all. He will then let me know nutritionally what "I" am deficient in so I can take my supplements in a targeted and not a shotgun fashion. Hopefully we can work on giving my body what it needs to fight this. What I really appreciate is that he is also associated with Shaklee and will recommend Shaklee products for me to take.

Julie and I have talked about what it may mean to 'not' get diagnosed officially. It does mean that things are not as far along as they are with other people's cases, and that is a good thing. I think there was just something about hearing it being definite that would have left me with my own 'definition of the fight'. I am coming to terms with the fact that I am missing only 1 of the 4 criteria to finish it off and that such a small 'need' is really none at all from my perspective of the fight. It certainly would make a difference to the insurance companies, but it does not change my lifestyle and nutritional needs.

You may have noticed I changed my blog title from "My Story" to "My Natural MS Fight" since it seems, at least for now, that is what I can do.

One last thing, for those that may read more into this that what I have written. I do not have rose colored glasses on. I think I am a realist as to how difficult and time-consuming this battle will be. I don't think that dietary changes are the answer to everything, but it is where I get to start. I have a hope bigger than this disease and I have to leave room for the Lord to decide when and if I am to overcome this. It is my responsibility to fight, it is His job to decide when to relieve my symptoms.

Jun-08

I had an EP (Evoked Potentials) test a week or so ago now and all but the visual one was within normal limits. 90% of MS patients have abnormal VEP tests, so for that I am in the same ballpark as most. I still have not met back w/ Dr. D about a treatment plan (if any). That will be in another 10 days or so.

My balance is off quite a bit, although mostly right when I get up and oddly enough going around corners in hallways or adjusting to get through a door. I have started touching doorways and corners so I have a little 'extra' information about where I am. It works well although it strikes some people as odd if they don't know why I'm doing it. My leg is still hard to pick up unless I'm thinking about it.

I think, after reading a lot about treatments, that Julie and I have decided to forgo pharmaceutical treatments. They have a lot of side-effects without much benefit that is traceable. In additional reading, we think it is most important to get my body in a well 'nutrified' state, as most MS patients have deficiencies all over the place. Once we have a handle on that, we can see what the world looks like.

I am in a process of meeting with a nutritional doctor, Dr. Brouse in Oregon who will help me determine what my body needs.

Apr-May-08

I Met w/ Dr. D and he went over all of the tests that Dr. W did and then did more. It was obvious to him that it was a neuro problem but as expected wanted more testing. I had a 2nd MRI, this time of my head, C-spine and T-spine. They came back finding another lesion in my neck at C5 (but not old enough to 'brighten' with dye) and possibly my upper back, although it is faint. Additionally, I had a lumbar puncture (spinal tap) and had other test run for Lyme disease, Lupus, and other stuff that all came back negative.

Mar-08

I saw Dr. W and went over my symptoms and knowing the kind of person I am, he asked me what I thought of it (the last few times I have been to see him, I had diagnosed myself properly). I told him my fear of it being MS and he agreed that my symptoms were consistent but there were many test before that could be determined. He did all kinds of things and ended up referring me to Dr. Dean (neuro) and ordered my first MRI (head).

The MRI showed a rather large lesion in my brain (right side) where the motor stuff is (which is why my left leg is an issue). The MRI alone is not conclusive, as the radiologist said, it was a lesion or a tumor.

Sept-07-Jan08

In August of '07 I was meeting with my trainer and that is where I pick up the 'we noticed things are not improving very quickly at all'. In September I was sick the entire month, really. I had the Flu, followed by Pneumonia, followed by the Flu again. It was awful. In hindsight I know that I also had my second attack this month.

My symptoms greatly worsened (August compared to October).

I was at a clients office in (we'll say) October and she noticed my left foot drag a bit (I caught my toe) and she mentioned that I should see a doctor about it. She said that she had MS and that her first 'sign' was a toe drop. She didn't want to be an alarmist but was concerned and I appreciated that info. As it turns out it really got me thinking and much more serious about this whole thing.

By December there was no improvement despite continued work at the gym. In January while in Kansas, I fell onto the bed while losing my balance getting dressed. It was then that Julie and I finally decided that seeing a doctor about all of this was required.

About two years ago

I was in Karate class regularly and started having great difficulty doing anything with my left leg. Kicks and such were nearly impossible and I couldn't jump with that leg anymore. I didn't think much of it at the time. Although I would leave class with a limp, if I drank Gatorade and ate a banana, rested well, I felt 'fine' but there was always something about my leg that made me feel like it was weak. I couldn't place it and simply thought that since it was my left side (I'm right-handed) it was just normal weak-side behavior.

After a few months of that, I got to where I could not progress in Karate. I took a break and went to see a trainer to get my muscles stronger.

After about 9 months to a year working with her, we both noticed some improvement to my balance but no major strength differences and I still had the fatigue / limp issue after exercise.

About four years ago

A doctor friend and I were talking about 'how I had childhood asthma' and he stopped me short saying that asthma did not go away (I was shocked). After some tests I learned that I did have a terrible airway reduction (34% of normal if I recall correctly (but I was normal for an 85 years old that was 5'6" :P )). Anyway, I began taking Advair and have seen tremendous improvement. I'll be on that forever to keep me from being on oxygen at 65.

Back-story from years ago

Well let's see, medically speaking I have asthma (although those details I'll go through in another post), and have had pneumonia about 6 times over my life (the latest bout was just 9 months ago, but more on that later also.

My legs (but mostly my left) have seemed to 'always' have a mind of their own if I stretched in bed. Even Julie remembers laughing about it. It seems that symptom may have been an early sign but we thought nothing of it.

Just getting started

I thought I'd start blogging about my MS experience(s). I thought it might be nice to go back and go through my memory about what has happened when so I (and others) can measure progress and what-not.