5-27-18 Update

Has it really been almost 3 years since I've last posted on this blog? It was really interesting for me to read through all of the previous posts; thankfully there are not too many, so it was quick.

In the past 3 years not much has changed EXCEPT everything has gotten worse. More progression. Still no visit to the neuro, and still no official diagnosis. I am still really leaning towards PPMS, but am now committed to seeing an MS Specialist once I get insurance. I'll update on that when I know more.

Why PPMS? Well, let's look at the definition of RRMS from the National MS Society:

Clearly defined attacks of new or increasing neurological symptoms. These attacks are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may completely disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission.  

That is 100% not me. Either I have PPMS, SPMS, or something else, but not RRMS. I can pretty much rule out SPMS though, since it follows RRMS ... if I've never had RRMS, then why would I have SPMS? Or maybe I'm wrong?

It is said that in PPMS lesions do not necessarily appear in the brain, but usually there will be some spinal chord activity sooner or later. I am going to make sure the new neuro does an MRI of the spine as well as the brain.

Hopkinsmedicine.org has this to say:

PPMS is identified by steadily worsening neurologic functions in the beginning without distinct relapses (attacks or exacerbations) or remission. The rate of progression may vary with occasional plateaus and temporary minor improvements, but declining neurologic progression is continuous. 

Totally me.

They go on to say that people with PPMS usually have problems with walking that worsen over time. Again, that's me.

There are more reasons why I think it's PPMS, but those are the ones I care to share right now. I've never actually seen an MS specialist; just general neurologists. I'm hoping the MS specialist will either see right away that it's MS, or see right away that it is not. Nothing gray. The first neuro I saw way back how ever many years ago said I had a textbook case but nothing specific was on my MRI yet. I liked her, but she was not a specialist. I want to get to the bottom of this.

Anyway, nothing has changed [meaning no new symptoms] but everything has gotten worse. The way I live my life has had to be altered quite a bit over the years. I do not think I ever shared on here that I used to run, hike difficult trails, walk 4 miles daily, and so on. I was very active, very fit. Not only did I do all of that, but I also was a single mom (they are adults now and such awesome people), homeschooled, and very much in to healthy eating. I cooked nearly everything from scratch using whole foods - even made my own crackers, pasta, tortillas, and so on. I have had to learn to compromise and take short cuts. I'll share about this in a future post.

I also used to cook supper for several people each week night. Now I make supper for a small few once or twice a week, and I keep it very simple.

I used to have a lot of responsibilities around the farm. Now I just do what I can and everyone else does the rest. All of my children live near by, and I live in my own apartment on one of my sons' property, so help is always close.

I rest a lot during the day - I do a little bit for about 15 minutes or so and then rest for at least a half hour, sometimes more, until I get up and do something else for another 15 minutes or so, rest, and so on. This is the only way I am able to get anything done.

I hardly drive at all now, and when I do it's only around our small town when I feel able.

I need a walking stick. I can only walk a short distance without assistance, and I must go slow. I mean slow. Like, I can look normal to the unsuspecting eye as long as I am walking really slow like I'm lazy and don't care, and have been honked at in parking lots for not walking faster across the road. My children and I used to go to the zoo frequently and use that as a place to walk and get exercise. Recently I went back to my home town and went to the zoo, only this time I had to be pushed in a wheel chair. I'm 42 years old. I used to walk around that zoo for hours on end.

I'll post again soon. I think.