Note we may have some server downtime today and this weekend as we perform some upgrades. Please save a copy of any posts you make during this time in case we have any server trouble. Thank you!

My 9 month HiCy follow-up

A board to discuss Revimmune as a potential therapy for multiple sclerosis

My 9 month HiCy follow-up

Postby mommasan » Thu Mar 26, 2009 7:00 am

Had my 9 month at Hopkins. I should preface this by saying that my symptoms have increased over the last 2 months but no reactivation. I will list them to get them all in:

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!!

Sandy
User avatar
mommasan
Family Elder
 
Posts: 119
Joined: Sat Mar 15, 2008 4:00 pm

Postby chrishasms » Thu Mar 26, 2009 8:39 am

The spasticity part made me so happy because from 9 to where I am at now is 12 I have been spastic as hell.

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!!
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby mommasan » Fri Mar 27, 2009 8:12 am

Thanks, Chris. This spasticity is really devastating right now. I feel like I should be able to do so much more, but when I get up to walk I feel like I have intensely tight bands around my legs, and tight rubberbands cutting into my ankles and feet. Not to mention the greneral squeezing/strangling feeling around all my limbs. I was doing so much better 3-4 months ago. Also, it used to improve greatly as the day went on, but not so much now.

I have to switch to Medicare- current insurance only covers 20 PT visits.
User avatar
mommasan
Family Elder
 
Posts: 119
Joined: Sat Mar 15, 2008 4:00 pm

Postby chrishasms » Fri Mar 27, 2009 9:26 am

No need to. The MS is not back it's her body healing believe it or not.

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!!
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby chrishasms » Fri Mar 27, 2009 11:25 am

The body needs to relearn everything it's lost from MS. The spasticity is created, most neuro's feel, from not having the signals going across nerves in the correct way. With a lot of these lesions healing, the body is sending way more electricity across this new, good Myelin than it needs to because thats what it thinks it needs to do and it takes some time to learn it doesn't need to send the same huge jolt of energy anymore to get the same result. Eventually the body re-adjusts the electrical charge needed and the body should relax.

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!
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby robbie » Fri Mar 27, 2009 11:57 am

This has been the case with most of us

you mean the 9 people
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby mommasan » Fri Mar 27, 2009 1:04 pm

Well, unfortunately, I have had no lesion healing since HiCy. Dr. Kerr said this will take years in my case. The lesions in my brain are EXTENSIVE and most have been there for almost 2 decades- and according to my FORMER neurologist , and this was when I was still working out 2 hours a day and normal, I should have been in a vegetative state. However, as far as HiCy goes, I am following the path of a RRMS patient.

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!!

Sandy
User avatar
mommasan
Family Elder
 
Posts: 119
Joined: Sat Mar 15, 2008 4:00 pm

Postby Lyon » Fri Mar 27, 2009 1:34 pm

.
Last edited by Lyon on Sat Nov 26, 2011 2:02 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby chrishasms » Fri Mar 27, 2009 2:40 pm

Actually there are 29 of us in this go round in the actual trial. There were 9 in the very first trial. That does not include the others who have been treated off label w/o actually being assigned to the trial.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby chrishasms » Fri Mar 27, 2009 4:44 pm

Robbie I understand you are upset that everyone who is doing this is not posting. You must remember there are a half a million people with MS in the US alone. Even if they fired 5 a week through JH that would only put about 250 people with this treatment done. I would say that of the 250 treated, half of those may have internet so that makes the number 125. There are 6 or 7 of us who post here and that would make us roughly 8% of all treated who at least post about it and we have nothing bad to say so far!
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby barbbelle » Sat Mar 28, 2009 6:45 am

Sandy, I am so sorry that you are having a hard time! My 9 month is in a few weeks and i feel like my spasticity has been worse on some days too. I swim 2-3 days a week and I get so excited about the stuff that I can do in the water, just like Chris. I feel like I am just slower onland than I have been lately, but we will see on the 25 ft walk. I have 2 loftstrand crutches and can't take even one step without them. i just can't figure that out! I am looking forward to seeing the JH docs because they are so positive and they get me back ontrack. I am SO impressed that your math test is a 60! I have all spinal cord lesions and no brain lesions and i only score a 40! I think I get nervous and I have only done the test twice (they forgot to do one pre hicy and my neuro at home never tested me with it before). I have noticed that any type of stressor on me is horrible for my symptoms! I think that the stress of colitis and the steroids are just setting you back a bit. Once that is over, you will start to feel better i'm sure! Hang in there, girl! Barb
User avatar
barbbelle
Getting to Know You...
 
Posts: 13
Joined: Thu Jul 10, 2008 3:00 pm

Postby mommasan » Sat Mar 28, 2009 7:05 am

Thanks Barb. My husband and I attribute the 60/60 to my OCD. I just can't let anything go. Dr. Hammond disagrees with that explanation- but boy do we make him laugh!! Rod was going on and on about his newest technology device- my comment was that it's no use to me until it has nanotechnology to heal my nerves.
User avatar
mommasan
Family Elder
 
Posts: 119
Joined: Sat Mar 15, 2008 4:00 pm

Postby chrishasms » Sat Mar 28, 2009 9:52 am

See I am so happy to hear this stuff from Sandy just because the docs never told me to expect this. I was kind of thinking I had just hit my best and it was my fault for not exercising more lol.

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!!"
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Next

Return to Revimmune (cyclophosphamide or cytoxan)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service