Mar 032016
 

Hi again old friend. 🙁

I went to my scheduled follow up appointment with my neurologist to discuss how the copaxone is going. Apparently not so great. I did not expect much so here I am. I expected to get another round of steroids, that I detest, but instead he prescribed physical therapy. Eriksgirl was pleased, and I am just glad it is not steroids.

Physical therapy has begun. I did learn some things that I did not expect about myself. I did not realize that my left leg was stronger than my right. I would assume this has to do with the exacerbation because my right leg was excessively weak under some of the tests compared to the left. Some of their activities are focused on my balance which is good. My balance has never been great, but it has now gotten to a very bad place. I am interested to see how far physical therapy can get me. Hopefully significantly better.

Aug 032005
 

I know I have been bad about writing, but there is much ado lately:

  • My daughter developed a large café-au-lait mark (looks like a large birthmark) which can be a sign of Neurofibromatosis if more develop. Fortunately I have one, my wife has one, and the pediatrician has two and all without problems. Just something to keep an eye on.
  • My son has a heart murmur, though the diagnosis has not been done as to the type. Smith life speculation is that it is a mitral valve prolapse. We’ll find out on Thursday at the pediatric cardiologist
  • Then my son has a supracondylar fracture (elbow) which will require surgery to place pins. Upcoming Monday.
  • MS has worsened and leg weakness continues. Will work on scheduling some Solu-Medrol next week after my son is cleaned up.
  • etc.

At least I haven’t been up to nothing! 😉

Jul 102005
 

I’ve long known that Best Buy is neurotoxic and frankly I’m surprised that so few of their customers go postal. But now I must add another chain to the list. Today, shortly after arriving at Walmart, I got very dizzy, leg weakness, and had trouble walking. After I got home (and cooled off 😉 I got back to normal. Some people may blame me getting hot on the problems, but I think we all now know that Walmart is neurotoxic!!! 😉

Jun 202005
 

I’ve been having some leg weakness this past week. It hasn’t really impacted me doing anything, but it has impacted my gait. And here I thought that my balance couldn’t get worse. At least I look like the “life of the party” with my pseudo drunk swagger.

Jun 262004
 

For those who are interested in the status of the exacerbation here we go:

 

  • Tremors: The past couple of days have been really good days for the tremors with virtually none. I did have some this morning after I got up but after noon I haven’t had any.
  • Burning in Legs: Has been virtually non-existent since Monday but there have been a couple of mild episodes. There was some this morning – as with all of these symptoms – which made me unhappy because I thought they were all coming back but then they went away in the afternoon
  • Leg Weakness: Again came back a little bit this morning but went away like the others. Otherwise has been gone at least since Monday.
  • Foot Numbness: Complicated symptom at best. Still don’t know whether to blame the MS or not since I had some bad arch pain which could be consistent with another cause – the joys of flat feet. It is much better than it was at its worst and like everything else is worst in the morning when I wake up. No wonder I’m not a morning person! 😉
May 262004
 

Right after the Solu-Medrol treatment I noticed that the numbness in my feet and my leg weakness were better. Not that I think the Solu-Medrol even remotely had enough time to work just that we are wrapping up this exacerbation on its own. It would be consistent with the pattern of a couple week exacerbation and then it goes away. At least I will hopefully be symptom free shortly (except for the steroid side effects) which is good.

May 232004
 

Today the leg weakness significantly increased when I woke up in the morning. Fortunately I have not had any problems walking yet. The numbness in my feet also got substantially worse this morning but leveled off later in the day to the numbness that I have been experiencing. I will call the neurologist in the morning to see about immediately going on some steroids to help. I am not sure that we will be able to begin the Solu-Medrol before I leave town for a week. If that is the case I’ll see about taking high dose oral Decadron. He should also have the results of the MRI tomorrow so he should have seen it by the time he calls me back.

May 182004
 

I am very happy to report that the weakness that I have been feeling in my legs appears to be gone. This happened suddenly (it always seems to be this way) late yesterday afternoon. I even took a long walk with my son and didn’t notice my legs at all which is a very good sign. My feet did feel a little more numb when I woke up but have since returned to their regular numbness.

May 172004
 

The weakness in my legs got a little worse on Friday but has held pretty steady since then. I don’t notice it if I just stand up but if I walk to the break room, bathroom, etc. I definitely notice it. The numbness in my feet may be getting a little better but at worst it is staying about the same. Phoned in my symptoms update at the same time as the tremors so we’ll see what the Dr. has to say – since this stuff isn’t critical I’ll probably hear back tomorrow during lunch.

May 122004
 

I just got off the phone with me dr. as I write this (4:40 pm). I have had a rash of new symptoms for a couple of months now. Some of the new stuff was MS Pain (I will go into more detail later), Itching (I will go into more detail later), and very recently foot numbness and leg weakness. The later is what I called the Dr. about. I asked his personal recommendation at this point and he said to wait a week and follow up with him to see how I was doing – this is probably because he knows me aversion to solu-medrol because of the bad attitude it gives me. He said after a week if it hasn’t gotten better then he’d probably prescribe oral high-dose Decadron. He said most studies indicate that it is just as effective as Solu-Medrol. He said if that didn’t work than he would recommend proceeding with Novatrone to nip it in the bud. I really don’t like the prospect of that – and told him as such – but I really don’t think it will come to that. He also said that the side effects to Novatrone are much better than Solu-Medrol. I told him whatever is necessary it is OK to proceed with.

He also expressed concern that I have had a couple of exacerbations back to back while on the Rebif. He countered by saying that who know what they would have been like on nothing. He said he would be eager to see the new MRI’s come July to see if there has been a lot of activity and then deciding what to do then. I certainly want a drug that works now because now is the time to control the symptoms to prevent disability.

We also went on to discuss my Zoloft dosage because while it has helped a ton I am still a little sensitive at times. It is much less frequent, much less severe, and I am able to keep it hidden. I asked him what I should expect from the Zoloft. He said that I am on a very low introductory dosage and most people are on 100mg to 200mg so he bumped me to 100mg. He said that since I tolerated 50mg so well I shouldn’t see any ill effects in moving to 100mg. He also offered to have his staff call in a prescription but I said I have plenty to double-up on until our next appointment when we can evaluate how well it is working.