Bad news first, it has been confirmed by a second (and actually third and a 4th year OHSU student) that I have ms. The good news is that I didn’t purchase this domain www.runwithms.com in vain. I’ll run with the good news. Plus I would have felt awfully silly saying to you all that “oh BTW, I don’t have ms afterall.” So life goes back to normal (well normal as of late) and I can stand up and yell “Huzzah! I have ms!”
I almost didn’t make it to OHSU for my appt. The paperwork they ahd sent me said to be there 30 minutes early and if I were 10 minutes late, they might reschedule me. Well it had taken me 3 months to get this appt, so I wanted to make sure I arrived on time. I checked our transit systems trip track (a great online utility that you plug in a start and finish location as well as a time you leave or arrive and it returns the exact (well mostly) busses you need to use to get there.) I discovered it would only take about 35 minutes to get there, no need to have Ruthann drive me after all. I had one connection to make and I’d be there.
So first off the bus was packed and therefor slow. Then I accidentally got off a stop early. The road at my connection is pretty crazy and busy, so to discourage people from cossing the busy streets they have tunnels under the roads (which by the way are one of the least desirable places I have ever been, gross!) So I take the tunnel and come out in completely the wrong area. I keep walking and see my stop, but darn it, it is going in the wrong direction. I ‘m looking around and I see no other 66 stop and noone around me has any idea where I should go including a bus driver. So I cross a couple of streets and low and behold, there is my stop. So I sit down to wait for it, luckly I had my Murakami book to keep me company. I read and read and read and no bus. There is a schedule on the wall of the bus shelter, so I check it out an dfind out that the last 66 runs at 8:04 in the morning, apparently the bus I was to connect with that I missed. Arrg!
So another bus comes and I ask him if there is another way to get to OHSU. He says yes, get on my bus and get off at the next stop, then walk 3 blocks up to Broadway and catch the 8. So I do that, wait at the stop and get on the next 8. The clinic supplied me with a map whcih I think is designed to confuse. I get totally lost in my head and have to ask the driver wher I get off, I tell him I need to be near the tram (an actual tram that the city paid a ton of money for to take people from an area by the river that nobody can get to up to the top of “pill” hill where Oregon Health Science University is.) So he gets me close and I am looking around and at mu map and nothing is adding up. By this time I am way late, I don’t even want to know the time. I stop a girl and she says “Oh the building you want isn’t on the hill, it is down below, you’ll need to take thr tram to get there.” I think to myself crap, but at leat I get to ride the tram. You get a nice view of Portland and of the neighborhood that protested vehemantly by placing signs on thier roofs that said “%$#^ the tram”. Unfortunately the signs were no longer up. When I finaly got the nuerology dept. I realized my fears where for naught and they got me right in. I didn’t even have to wait.
So trip asside, the diagnosis was that I have ms. Dr. Edgar put me through all the tests and determined that I am not showing any signs of symptoms or that would send up warning flags that the ms is progressing. Basically I am your standard relapsing/remitting ms person. He did say I was in good health and that given that and how I responded to the testing that I have a good chance of no progressing quickly. He looked at my MRI with another Dr and student and they came back to say keep doing what you are doing, especially when it comes to exercise.
I had pretty much accepted the fact that I have ms, so I decided to try to understand as much about running and ms as I could from this visit. Both doctors assured me that running and the exertion wasn’t going to futher the progress of the disease at all. I had been a little concerned that by pushing it and bringing on potential psuedo attacks (or incidents of elevated symptoms, in my case the spells), that I may be doing damage. They both assured me that all resaearch indicates that this is not the case. They have several ms patients who run marathons as well and they absolutely agree that exercise has a positive effect on ms patients. Hurray!
Good for you. I to have relapsing remitting as well and only one relaspe since being diagnosed. So, so far, so good.
I too am healthy. I do not smoke, drank rarely and always in moderation, and exercised until my surgery. I was unable to walk due to my injury, and went to bicycling. But at my first post-op visit, they told me unequivocally not to be on a bike. It had soemthing to do with how the leg lifted beyond a certain point, blah blah blah.
But not that I am standing upright I am able to walk again. Granted, it is at a snails pace, but family permitting, I walk twice a day. Here in Florida, if you are not out by 7AM and out after 7PM, you are done for. So when hubby works days and the children sleep late, I have to walk around the house…Oooo, how exciting is that. And there is always someone home at dinnertime to walk with me. And due to the fact that I cannot drive yet, these walk are my life.
I am glad your diagnosis is confirmed, and that you are on the relapsing remitting category. And keep on running!!
What about a recumbent bike? I have never ridden one, but I know they are supposed to be much easier on the back. I have worked out on a stationary recumbent and I really enjoyed that.
I’m glad to hear you are up and walking around, that is great. I imagine the route around the house can get a little boring. Remember their is always the opposite direction from what you regularly walk. Ok, ok that isn’t too exciting either. We do what we can and I am glad you are well on the road to recovery! Keep it up.
BTW Red, have you ever looked into Chi Walking? It is a method of walking/running that incorporates the body awareness of Tai-Chi. I have been doing Chi Running for years, it is great. Here is a link to a book on Amazon – http://www.amazon.com/Chi-Walking-Mindful-Lifelong-Health/dp/0743267206/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1218130962&sr=8-1. The whole concept is how to exercise injury-free.
I just book marked that book. I will indeed be checking it out.
My problen right now is numbness, and severe numbness…like when your foot is asleep. On a scale of 1-10…my feet are about a 6-7, no kidding.
And inasmuch as I try to ignore it and let my mind go elsewhere. I am brought back to reality when my feet hit the floor.
It has not stopped me from walking, but it extremely annoying. My feet feel heavy and the mere thought of someone or something touching my foot, sends me into a tizzy.
I am hoping that it is just something my body is going through as part of the recuperation. But one of the nurses at the spinal institue said it may be a side effect I live with the rest of my life. Now how positive is that??
I know they are realists, but come on. I prefer to think that, this too shall pass and I go on with my daily life. I am scheduled for my next post-op visit in a week and we will see what they have to say at that time. Keep your fingers crossed for me!!
I will keep my fingers crossed indeed. Good luck! I also have some numbness in my feet. I thought initially it was a running issue, but I am pretty sure it is ms related. It sort of comes and goes, though mostly it is there. The issues I have had with numbness have all waxed and waned, so perhaps yours will as well. Seems odd that nurses wouldn’t offer you any hope, especially considering how different ms symptoms can be for folks. I had had some foot drag issues as well, but they seemed to be tied to fatigue. I would go running and everything would be fine, then say 5 miles into my run I would start to have trouble lifting my feet. One time it got so bad I fell. That was right before my initial diagnosis. But the good news was that it went away, and maybe your will as well.