Wife completed infusion 3-18-16

[Brentorious]

She was at the infusion center from 8-5 each day. No problems during the week of, and the staff at at the infusion center was exceptionally good.

Upon her return home, on Sunday morning she woke up with a big itchy rash over most of her body. Used Benedryl as needed to control. After a few days, the rash waned and by about the following Thursday it was gone completely.

Since then, she describes the fatigue as being similar to what she experienced the day after an injection of Rebif. Sort of a flu-like. A little caffeine in the form of green tea helps when she wants to go somewhere a do her physical therapy exercises.

[Brentorious]

Around week 4-5, the tired, flu-like symptoms stopped. She now feels like going back to physical therapy appointments. Though still wheelchair bound, she has ascended a large flight of stairs in each of the past two days. She was very tired after, but she hopes to build on this and regain some mobility. Her goal is to walk this year.

She still has a tremor that has taken her fine motor skills. I have noticed a very slight improvement, maybe a 5-10% reduction.

[sardi_g]

Thank you for the updates. I'm so happy to hear your wife is improving. With the ms stopped in its tracks, there's always the greater chance for the body to perform some natural healing. Thank you for being so supportive to your wife and taking the time to post for us.

[hunterd]

what great news! It is a fantastic feeling when someone feels better and others notice an improvement. I hope that she can continues to see and feel an improvement. Please keep us informed.

[pb909]

Good to hear. Keep us posted.

I have a thread of my initial treatment and keep it updated and I encourage others as well to update their experiences if comfortable since this is a pretty new DMT.

[alk]

I'm glad she's making improvements! Yes, please keep us updated.

[Brentorious]

Over the past month she has continued to improve. The pace of improvement is slow, but the trend in general is positive. It has been 11 weeks since she completed her infusion.

I mentioned last month that she climbed a set of stairs a couple of times. It's a 20 step climb outside and now, weather permitting, she does it daily. At the top, she then walks along a rail to get to a sofa. This is after 4 weeks of physical therapy (PT), two appointments a week. At first, on PT days, she was too tired to do her stair climb. But now, she climbs on those days too. On non-PT days she also does a series of exercises on a yoga mat.

One day last week she walked about 6 feet with the assistance of a cane on one side and a caregiver on the other. However, right now, she really needs to get better with the walker before trying to go to a cane.

Last week at PT she walked about 50 feet using a walker, with the therapist following holding a gait belt around her waist. We are now going to start having her use a walker at home on a few select trips to/from the bathroom, where she would normally roll herself.

Speaking of PT, I want to relate something I have learned about PT that I think is critical. The type of PT that an MS patient needs is totally different from what someone needs who is recovering from an injury or surgery. That may seem obvious to some, but I didn't know any better. Last year she spent some time going to PT and was not getting the type she needed. I didn't help, and she gave up on the whole notion of PT until we found someone who had an MS specialty and saw the difference in approach. I strongly suggest you talk to potential therapists and ask about their experience working with patients with neurological related disabilities.

On PT days, as soon as she gets home she gets a protein shake. They say with strength training, the body takes up protein more readily if taken in soon after exercise. I'm not sure if that applies in this case, but that's what we're doing. It can't hurt.

I have started to notice that she is more active in general. She used to sleep a lot during the day, especially after coming home from PT. Now, I rarely see her sleeping during the day, though she does lie/sit on the couch mostly. There are some other little things I've noticed too. Like in the morning, she used to wait for me to get up before getting out of bed. Last week one day I woke up and she was GONE! She was down the hall with her iPad. She also rolls around the house and does various things that she didn't have the energy to do before, like looking for things she used to send me looking for, finding out where the cat is sleeping, etc.

So overall, we're quite pleased and we do not yet see a plateau or ceiling to what she can recover.

[pb909]

Glad to hear of this progress and hope it continues.

Very good point on PT for MS patients. I always call ahead to insure they are specialized in MS care, and also have been to PT centers that have separate rehab for neurological & paralysis patients and a different "room" for sports & general rehab.

[Brentorious]

Just passing the 14 week mark. Slow improvement continues.

At physical therapy she is walking longer and longer distances with a walker. She has been fitted for an ankle brace, and when it comes in, her therapist wants to get her started walking with a cane.

I notice little things that reflect improvement, like not reaching for a grab bar where she used to always reach for it. After climbing stairs she would sit down and have to pull on her legs with her hands to get her legs onto an ottoman. The other day she sat down, took a deep breath and flipped her legs right up onto it, just like anyone else would.

She has a cerebellar tremor that has taken away her fine motor skills. I started to see some improvement, about a month ago. Recently, a friend who doesn't see her everyday said she could see about a 10% improvement. This week she has started brushing her own teeth. It's still very difficult for her to do, but before it was simply out of the question.

Her vision has been damaged by optic neuritis, but yesterday she told me that her long range vision is improving.

Late last year she tried Tecfidera. Long story, but she ended up hospitalized with extensive blood clots in her legs caused by dehydration. A couple of weeks ago a sonogram showed no clots whatsoever. Now we can think about getting on an airplane!

We are not seeing any side effects at all from Lemtrada. Her lab work continues to come back looking good.

[Brentorious]

Still seeing slow improvement. She was discharged from physical therapy last week because she can do the work that she needs to do at home. She has started using our elliptical machine at home. She tires quickly but the fact that she can get on it and stay on for a few minutes is a big improvement.

Lab work showed probable UTI this time, though she has no symptoms. Doctor gave 1 week of pills to treat it.

The orthotic device she got is an AFO (ankle foot orthotic). Her right leg has had "drop foot" for quite some time. The device keeps her foot pointed straight forward so it doesn't drag off to the right while she is trying to take steps. It has helped a lot.

It still seems the tremor is easing slightly. She is starting to do a few things that were out of the question before. Last night she was able to put her pills into her mouth herself, and it's been over a year since she could do that.

Slow progress. Baby steps. But it is all still going in a positive direction.