Verfasst von: melscholz | 27. März 2013

10 Month Update

10 months since my „day 0“! Sometimes time flew, sometimes it crawled. There were highs and lows. It was never boring.

People often ask how I’m doing. Whether it was worth it to go through HSCT.

This much is clear: YES! Definitely!

At the moment, I seem to lack the time (I’m finally working again) to write a comprehensive, detailed update all at once, I’ve decided to write bit by bit and divide the update into something like a triology. (That’s the way all successful authors write these days, isn’t it?)

Every person who decides to have  HSCT for MS respnds differently -here are the main changes that I have noticed so far …

From head to toe…

  •     The cognitive fog has become thinner – I’m thinking faster and remembering better.
  •     The saccades (jerky eye movements) have, according to my neurologist, disappeared.
  •     My scalp and nose no longer tingle/itch.
  •     My taste buds are more sensitive – I cannot eat hot foods like I did before HSCT  and don’t use as much salt as before.
  •     Swallowing troubles are gone.
  •     The spot on my back that I sometimes used to scratch until it bled has stopped itching.
  •     My arms and fingers don’t tire as quickly as before when using the keyboard.
  •     My fingernails don’t break and split anymore – probably because I’m not on any medication..
  •     It’s easier to handle silverware and cut my own meat.My digestion is better – before HSCT, I sometimes used a laxative, not once since.
  •     My good old bladder (“old” is true, “good” is a figure of speech 😉 ) hasn’t made up its mind yet. Sometimes it’s better than before (which means that I only have to get up once at night) sometimes it’s worse (which means that I do not always make it to the toilet fast enough L )    Spasticity in my legs at rest has almost completely disappeared.
  •     The purple / pink color („Purple Foot“) of my left foot, which indicates a neurologically-rooted circulatory disturbance is much less.
  •     My balance / coordination was better, is currently worse again.
  •     The strength in my legs is not so great.

Overall, lots of little things have either gotten better or at least stayed at the same level.

I freely admit that I wish my balance and leg strength were better. That’s been a disappointment to me so far. But truly it’s not fair to feel disappointed because I have been off all meds (Copoaxone, Tysabri, Ampyra) for more than 15 months with no progression, for the first time since my diagnosis in 1998. And since I had MS for a long time (15 years), there is permanent damage to the nerve fibers. The main goal for me with HSCT was/is to stop the progression.

Twice a week I go for physical therapy, on the other days I try to do at least 10 minutes of exercise at home to make all my muscles move and work.

The challenge is not to overdo it because I need my “leg power” to get me through the rest of the day.

Taking a break or a nap during the day really rejuvenates me and makes me feel better. The fatigue in the first 6 – 8 months after the chemo was more extreme than it is now, resting 2-3 times a day was typical then.

In my next posting, I’ll tell you a bit more about the emotional highs and lows of the last 10 months.

Since many people have questions about HSCT with Prof. Slavin in Tel Aviv, Israel, it seems like a good idea set up a FAQ (frequently asked questions) page, which I’ll do soon.

And then let you know  how my application for reimbursement from the insurance company is proceding.

For those who want to know more about HSCT for MS, I recommend the Facebook group „Hematopoietic Stem Cell Transplantation for MS and autoimmune diseases.“

https://www.facebook.com/groups/149103351840242/?ref=ts&fref=ts # / groups/149103351840242 /

Or … just write me an email: melscholz@t-online.de! Sometimes it may take a day or two, but I will get back to you!

SAM_0164

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Responses

  1. Dear Melissa,

    So happy to hear that you are making some progress. If you can stop the MS in its tracks that would have made the treatments worthwhile. Status quo with MS is an acheivement. I saw your Mom and she said that she had a wonderful visit with you in Brat. Please keep me on your email list.

    Love,

    Lee

  2. You look great. Love your hairs… and sense of humour 🙂


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