Neuro appointment
I went to see my neuro yesterday for my quarterly appointment. I wasn't doing as well as I thought, I guess. On my way out to the garage, I could not lift my left leg up the second step! DH saw me through the kitchen window and came to my rescue. (Then decided to come along to take me to my appointment!) Could this be a result of the exhaustion I felt last weekend? I doubt it. History tells me that rest always saves me from exhaustion, and I got plenty of rest this week.
But this might explain why I ended up missing my meeting Thursday night. I, and a few others, went to the wrong address for the meeting, and while I was at the wrong building I went to the bathroom which was down two short halls. The door must have weighed 40 pounds! and with a walker, it was very tough to get in. Then the toilet seat was on the low side, which made getting up very tough. To say I was wiped by the time I was done is not just a pun, it was a disappointing reality. I told one of my sisters, who waited for me and saw what a tough time I was having that I was going to skip the meeting and just go home. Which I did.
Then Friday I can't lift my leg up a stair. So even though my neuro tells me that steroids may not be as helpful as they used to be for me because I'm not dealing with a sudden onset of symptoms, he agreed to let me do a round of Solumedrol. I will do four days next week. Oh happy, oh joy. At least I got another Rx for temazepam, so I should be able to get some sleep.
And I can't go to St. Joe's outpatient unit because they are booked to the max for the foreseeable future. Which sucks, because I enjoy seeing the same nurses there, year after year. It's comforting. So I'll be going to another outpatient clinic that is associated with the hospital. They are supposed to call me to set up the appointment, and tell me where it is, because I don't even know what it's called.
So, send all good thoughts my way that this will help me to feel and move better. I'm not ready to slip down another link on the MS chain just yet.
Update on the knee: it doesn't hurt, but it randomly feels like it wants to 'give out' on me. But it wasn't the reason I couln't make it up that second step. That was MS weakness, pure and simple. I stopped wrapping it for a few days, but today I wrapped it again, and it does feel more secure when wrapped. Big duh on my part, huh?
I asked about LDN, and he said he was waiting for the study to be completed. He will not prescribe it without a study to back it up. He was adamant about that. Then he said he's more interested in the 4-AP studies, because that may increase my walking ability. 4- aminopyridine has been around since I was working at the MS Society in the mid-1990's I think - I remember reading the memos about it. Haven't they finished those studies yet??? Clearly, I need to do some research.
So, that's what's going on in my corner of the earth. I'm off to read about you - and research 4-AP.
Good Night, TTYL and Be Well
I REALLY need to research, never heard of that drug. I have a friend who still takes Solumedrol every couple of months just because. After 20 years she still walks and drives and works so may be something more to it.
ReplyDeleteSoluMedrol is a corticosteroid similar to those that our own bodies produce. It is used for many conditions, including acute relapses of MS. It's anti-inflammatory properties help to reduce the inflammation around the myelin.
ReplyDeleteI've used it quite successfully when my MS was more of the RRMS type. These days, relapses aren't quite as distinct. However, due to my fall last weekend and not recovering from it as I usually do, plus not being able to get my leg up that step on Friday, we're going to give it a try.
It comes with a long list of potential complications including cataracts, diabetes (it messes with your blood glucose for sure), and osteoporosis. Long term use is usually frowned upon for those reasons.