1. more numbness in hands and great loss of dexterity. I am having trouble brushing and bathing- still better tham before HiCy. That peg test was almost impossible.
2. Spasticity in my legs- particularly right one is really bad- timed walk was worse by a bit.
3. Fell to one side when I closed my eyes and put my feet together- Dr. Hammond caught me (didn't do that at month 6) and I have less sensation from below ankles- can't feel the vibration test at all.
4. Still no planters reflexes- nothing new there.
Got 60/60 right on that math test again- nothing new there.
Strenght is probably a bit better over all. 5+ in left leg and upper body. 5- in right leg.
I should also say that the exam room was really warm and that didn't help- I was overheated.
Tremendous nerve pain.
Last month I had the worst bout of colitis I have ever had. I was passing just blood and mucous for 1 week and unable to eat. Things went really down since then and I am still not well and am on steroids for that- which affect my sleep, mood and weaken me.
O.K.- here is Dr. Kerr's assessment:
Nutritional status is lousy, which affects MS- he wants me to start 50,000 units of vitamin D for a week and then 1X per week. I take D, but not that much.
Also test B-12 levels and add 2000 micrograms daily of folic acid.
High spasticity and pain are common from month 9-15 in RRMS patients after HiCy. Nerves are becoming active and not firing correctly, which causes confusing stimulating signals.
Start marinol to increase appetite and lyrica for pain. Each step is really agonizing.
STOP USING THE CANE!! Hard to do when I can't feel my feet and am afraid of tripping. But I did walk from the exam room to the van without it. The cane is more of a liability in my rehabilitation at this time.
PT for gait training and strength training.
I am still following an anticipated path for further recovery.
We survived the 3 hour drive back hom to NYC!!
I will tell you from my experience with PT. You will be sore and tired for the first month. Start at 2x per week for the first month then move to three times per week. By three months you should be able to handle everyday. I have medicare so as long as you have a doctors RX for PT you can go as much as you want. Doug will give you as many as you need lol.
Ed also told me with MS, if you miss one week of exercise, you can loose months of what you have gained because your body hasn't rehabbed enough for the muscle memory to hold (especially with MS recovery). With us MS folk we will probably need years of rehab and by that time working out will be just a part of our norm to maintain what we got back.
Get a stress ball, and a gripmaster to get the hands working again.
I'm sorry to hear you are having a rough go, but hang in there, you know it's going to get better!!
I have to switch to Medicare- current insurance only covers 20 PT visits.
Right now my calves and hamstrings are tight to. Since our body's are remaking, and relearning new connections, it is creating spasticity. We are toddlers right now so to speak.
I had 20 PT visits and as soon as I was starting to show something it ended. My PT is really doing well. I can walk for 15 minutes in the water, 5 of it without holding onto the bars. They say there is a 3-1 ratio, whatever you can do in water now, you can do on land in three months. If that truly is the case there is no reason to think I won't be able to walk into JH w/o a cane for my appointment in Sept. The PT folk seem to think it is pure muscle weakness that is stopping me from it.
That would lower my EDSS to a 5.0!!
Sandy, start stretching and make Rob help you. Since I have started stretching 2 times per day, my muscles are starting to remember it after a month.
http://physicaltherapy.about.com/od/fle ... rcises.htm
Start there!! I did!!
The lesion is not a bad thing. In fact it could almost be looked at as good. If the copaxone worked to retrain the body to forget the Auto Immunity, in the next MRI shot there is a good chance the lesion may be gone, or healing along with other MS damage. This was the case with me. My body addresses the issue, healed it, and has really kicked into gear the healing on the lesions in my brain. In fact before the lesion appeared, my body seemed to be much slower at healing the damage.
This has been the case with most of us but Keri. She may have had a much more serious, aggressive form of MS that may take two blasts of this to get it for good.
I'm just glad Sandy is doing well. I promise her that she needs to work out and reteach her body all this stuff again because we spent so much time doing things the wrong way we taught ourselves out of doing it right!
I asked several times whether I was progressing without lesions. SPMS patients get worse after HiCy and I improved greatly within 3 months, so Dr. Kerr said that I didn't fit the post-HiCy SPMS pattern.
We knew I was progressive/relapsing when they accepted me. But, all of my progression happened within the 2 years prior to HiCy. I was stable for 15 years- with 1 barely noticable relapse that lasted 2 days in the first trimester of my second pregnancy and another in my c-spine 8 years before that that has left me with residual numbness in my right hand. So, time will tell. I don't think anyone who has gone thru HiCy has had MS as long as I did- 22 years.
They still think the spasticity is a good thing- even in my case. I think Dr. Hammond and my husband wanted to trash my cane. I have been challenged to try to walk around the block without it!!! I am going to give it a try, as long as I am not alone!!
My issues are from Spinal Lesions as well. It's what Kaiboshed my foot we think because the lesion is right in line with that. I have no idea if my spinal lesions are healing as well as my brain lesions. I wish I did because my L'hermittes is pretty much gone unless I get really hot and I wonder if my one cervical lesion is healing.
Well June will be 15 months for me. If what they are saying is true my September appointment will be as Ren and Stimpy said..."Happy Happy Joy Joy!!"