steroids-progression-leg braces-long
 

I am sorry if I posted this before. Can not remember.

This has been an interesting year. I was dx'd last February after two episodes of ON, abnormal MRI, and abnormal neuro exam.

But last year things were "mild" or "early" or so they said.

This past year has been disappointing. I have not gotten better.

My eye has improved but my physical issues continue to add up.

I was sent to PT and OT this fall. I have significant weakness in the lower part of my body and in my right hand.

At this point I have a walker and a cane. I also have leg braces. As long as I have my braces on I can walk without assistance as long as there is something like a wall or something else I can get to if needed.

Without the braces I have a lot of trouble. My legs hyper extend and my toes catch on the floor.

My MS doctor wanted me to see a psychiatrist because he was not happy with my situation. He thought it may be stress. My psychiatrist gave me the evaluation and asked me to tell him again why I was there. :rolleyes: I knew I was sane!!:)

He said there was nothing that would cause me to have the physical problems I am having. So my Ms doctor started me on a daily dose of Prednisone. A very small dose but I still hate the very flushed feeling it gives me.

It has helped though. My legs do not feel so much like lead.

My MS doctor sent me a letter a months ago saying they were closing the clinic. It mostly relies on outside funds in order to keep their costs low.

The clinic was found "not profitable" by the hospital it is associated with and they decided to close it.

SO I had to find another MS doctor. I have not been to see him yet. I hate starting with a new doctor. I have seen some neuros who have been so clueless.

I am unhappy with this progression. What seems to be happening is a slow progression. I have not had any "flares" that have required any hospital stays. Only ON twice.

My poor strength and abnormal reflexes continue to advance. I am just confused and frustrated.

Sorry this is so long. Thank you for reading if you made it this far! ;)

I am really not whining but just wondering. My MS doctor was frustrated last time and he said we have a major problem here, you have a long way to go. What he meant was I am 46 and have a long life to live and I have progressed over the year.

On a positive note I have respite for my children and was given a grant by our local MS society for help with house work! yeah!

LA

Long time no see. Thanks for checking in. I'm so sorry for all your troubles and apparent progression. I don't blame you for being upset about it.

That is the nasty truth about MS...it is a progressive disease..:mad: Are you on any DMD right now? I hope you can find proactive Doc, who will get you on the right med combo for you, so that perhaps you can slow the progression.

Let us know how your new Doc measures up and I wish you the best..:hug:

I'm on Avonex and Prednisone and a few others to treat symptoms.

I have not felt like posting much. I do read on occasion. I come in to check up on my friends.

One plus to this new doctor is he is only 35 minutes from my home and not 3 hours one direction! That will make life easier.

I hate to complain when I know so many more have it much worse. My former church youth pastor is total care and does not recognize anyone anymore. He has the very aggressive rare kind of MS.

LA

Hello, LA.

I am very sorry to hear how things have been going for you.

It's possible the new neuro might be better than the old one and could offer you more help or information.

I have hyper extended both legs for many years. I had a PT coming to the house due to a broken ankle. She was very nice but I figured out real quick she didn't have much understanding about MS.

When I was weightbearing again the PT would tell me I am hyer extending and to bend my knees :rolleyes:. She was getting a little frustrated with me so I would try and walk how she wanted me to, I thought I was going to fall. After that I explained a little about MS and the way I walk.

Your neuro was wrong. You have MS, hyper extending can be normal for us. Your toes catching on the floor or objects is known as foot drop. I hope the braces are helping.

I have foot drop. I've had it since I was a kid, it's just normal for me and I don't give it much thought beyone watching what might be in my way or the placement of my feet.

Best wishes LA and I'm glad to see you posting :hug:

Thank you Snoopy,
I went through my first pair of AFO's in one month because of the hyper extension. I broke them..... :eek:
So they put me into a pair that are designed a bit different. These are better.

I have had foot drop for several years. Of course I had not idea, I thought I was just being lazy and not getting my toes off the ground.

My neuro was NOT happy to see the AFO's. He said they will weaken other muscles. Maybe they will but they help me walk! He is an older guy in his 70's and set in his ways.

I do hope this new guy is ok. I hate starting over again.

I have been very lucky with therapists. My OT's father has MS that has progressed to the point he is in a nursing home.

My PT noticed the foot drop and wide gate right away.

Foot drop is frustrating. I can not pick my foot up high enough to get my sweeper turned on! The on off switch is at the bottom of the machine. crazy.

At least I am not the one running it so much any more. :D

:hug:
LA

LA,

This has been bothering me and I was thinking :Ponder: (that can be dangerous :icon_rolleyes:)

Have you had a recent MRI of your spine or do you already know you have spinal lesions?

Spinal lesion can cause the problems your have with your mobility. Another posibility is a herniated disc that would be impringing on the nerve.

Just something I was thinking about :o

I have been thinking about just going off of the prednisone but I am not sure if 5mg's needs a taper or not. Do you know. I do not like being on it.

I have not had a recent MRI of my spine. I do not have any back pain so I am pretty sure it is not a disk issue.

I think there would be pain with that wouldn't there?

LA

My DH has a herniated disc last summer. His main problem was his mobility. He was using crutches because his legs were extremely weak and painful. His disc protruded and impringes on the nerve. He did have some back pain but mostly his hip and legs that were the problem.

Could this be part of your problem? I don't know, it was just a thought.

You might ask for a c-spine MRI just in case you do have lesions there, at least then you would know the why of your difficulties at this point. Spinal lesions are quite nasty.

As far as prednisone: LA, it's been years since I used it and I don't remember taperind dosage...sorry.

no advice just hugs :hug:

Well, there is no pain so I can't say for sure if a disc could be the problem. I am starting to have more trouble with my eyes again so it is difficult to know.
I will be starting with my new Ms doctor in a couple of weeks so there isn't much I can do right now.
I guess the only thing I can say is this has been going on over the past 8 months and I have been through OT and PT. No pain but significant weakness on my right side in my leg and hand. My back feels pretty good to be honest. :)
My last c-spine was a year ago and that looked good. They did the middle of my back also, can never remember that name, and it looked good too. No disk problems or anything.

No pain...just can't walk a straight line. :p And getting up the steps is a job.

LA