Boy.....Can I type or not..

Well.....I didn't want to say anything but since you brought it up......NOT!!

Been away for a while, so sorry! We are making plans to move AGAIN...this time to a farm in Missouri. My husband is going on ahead of us to build a modest home for us to live in while we decide exactly what we want to do in the future. We have to get rid of a LOT of our STUFF, the home will be much smaller than what we are in now.

Marion, Kitty, Sally...I'm sad to hear that you are having troubles. You have reminded me to get a call in to the doctor to renew my LDN subscription! I do NOT want to be without it.

I've never heard of transverse myelitis...During my last move in December...the left side of my thigh burned a LOT, especially at night. I assumed it was part of the MS and fatigue from moving. Is TM part of MS or something else?

Cherie, is something going on with your daughter that I missed?

Here is a link to an article on the Transverse Myelitis Association called “Transverse Myelitis and the Multiple Sclerosis Connection.”

Happy reading

Marion, is this your first bout with TM? I've had the sensitive areas before but nothing like this.....it's almost too sensitive to even have clothes touching it.

I'm not sure what's going on with me but I'd have to conclude that I'm in the midst of a flare. I'm having a terrible time with leg weakness and spasticity. I'm also having foot drop. Really hard to lift my left foot up high enough to prevent dragging it on the floor. My right leg is numb and weak but not as bad as my left one. I'm having spasticity in my hands, too. Especially my numb right hand. How can something be numb and hurt so bad?

I'm taking 20 mg of Baclofen three times a day but I might just up it to 30 mg. I'm supposed to go to the Neuro for my "every 6 month" appointment and I've been keeping a journal of all my sx on the computer. It's just easier to type it in a Word document and then print it out.

I'm still taking my LDN. I'm afraid to stop taking it just to see if I notice a difference. Not sure how much worse I could get but I don't want to find out.....at least not right now!

It is spinal lesion activity, Kelly, that seems clear.

It also seems clear that you are in an attack. The only part you don't know is how much worse that attack might be if you go off LDN at this point.

I would ride this out, and IF you decide to go back on Betaseron, do so after this attack lets up.

I have have three spinal lesion attacks since getting dx, and the very best one was while on LDN. None were nice though.

Cherie

Thanks, Cherie.

I don't plan on stopping LDN. I can still walk, albeit slow and clumsy, but I can still walk.

Honestly, I don't believe any of the DMD's do anymore than LDN. And sometimes cause undesirable side effects.....so I'm sticking with my LDN. I've had attacks while on the DMD's and they were worse than this so I'm taking this as a good sign that the LDN is doing what I need it to do.

I saw your post about your daughter. I'm glad she's doing better. It's so hard to watch your child struggle......I'm still praying for both of you.

Thanks for taking the time to address my issue when you've clearly got bigger issues of your own.

I finally broke down and made an appointment with the Neurologist for Monday. He had initially decided that I have SPMS, and I really hope this bump in the road isn’t interpreted as a sign that I really have RRMS. I have always been grateful that I was diagnosed with SPMS right from the get-go because that spared me the task of deciding whether or not to take any of the DMDs. Actually, my appointment is with my Neurologist’s Physician’s Assistant. I figure that if I have to decline the recommended treatment (DMDs), I’d rather tell that to the PA than risk a knee-jerk, ego-related reaction from the doctor himself. You know how doctors can be.

Kitty, I have had some of the milder (numbness below the waste, weakness in the numb leg) symptoms of TM on and off for many years (as far back as high school). I had never (well – almost never) had the extreme burning or the bladder weakness before.

I found a dospak of Prednisone and have started that this morning. Hoping it will help ease these sx or at least lessen the residual damage from the attack.

Good luck at your appointment on Monday, Marion. Let us know what they say.

I was seen at my Neurologist’s office yesterday. Since it had been just about a year since I had seen them, they did a pretty thorough exam. This included a “gate analysis” that is taken by walking on this weight-sensitive mat on the floor. The mat is probably 20 feet long, and it is hooked up to a computer that analyzes every little nuance of weight bearing on each step you take, as well as the profile of your gate. A year ago (pre LDN) I had the same tests, and it was really interesting seeing the change. The PA noted improved leg strength, eye coordination, and balance. She seemed to be only mildly pleased with the improvement, though I did see a slight smile behind her poker face. What I really wanted to hear her say is “OMG! What an improvement since you started the LDN.” But since I was refused an Rx for LDN by this doctor, I suppose I expected too much. As I left, the PA said that she was going to bring the test results to my Neurologist’s attention. She hesitated a bit, and then said “He’ll probably want to see this for himself.”

Next week I go for may annual MRI. That should be interesting as well.