90 Days Post Reboot Update
 

Hi,

Thought I'd update you on my status, for the one or two who have been following this treatment. For a quick review: I had high dose cyclophosphamide (immune system reboot) Nov 5-9, 2010.

I have been feeling very well since about Christmas Eve. Before then, I was pretty week and still had a lot of MG symptoms. Since then, I've become totally functional, and practically symptom free.

I saw my neurologist this morning and she was impressed. The last time she saw me before the reboot she did a disability screening scale on me and I had a score of 19, with mostly bulbar, but generalized weakness present. Today she repeated the screening, and I scored a 3. I still have residual eyelid and lip weakness as well as a touch of neck weakness, but everything else is NORMAL!:D

She was so impressed, in fact, she says that she will now feel comfortable offering this treatment to others, especially those with bulbar weakness. I was the first one at this center to try the reboot so I'm proud that because of me, others might too get help.

I don't know how long this will last, and yes, I still take Cellcept and some IVIG. Over time, if I continue to be stable, we may try and wean those away, but for now...to have my LIFE back...it's a small price to pay.

Anyway, thought I'd update. Feel free to ask questions.

Wow! I am amazed...Do you still find yourself getting weak after using your muscles? Were your limbs affected before? I would love to hear more as the time progresses.

Jessica

Sugrkiss,

No, I no longer get weak. I go to the gym 3X a week and do 45 minutes continuous circuit training. I plan to add in 2 hour long Zumba classes next week. Prior to the reboot I was exhausted after 30 minutes of gentle exercise (I am primarily an "above the neck gal" but do get limb weakness as well.)

I can speak normally all day long. Before the reboot I would tire after 5-10 words. That was so very frustrating, as people I tried to speak with would just nod and say "Uh huh." when I said something and I knew they didn't understand me. It made me feel so insignificant.

I am eating normally now. I had horrible nasal regurg, dysphagia and difficulty with chewing prior to the reboot. I am amazed I never had aspiration pneumonia. I can chug a 12 oz glass of water in 8 swallows without stopping. I can also now drink alchohol without feeling weak. The bagel sandwich I ate last week was FAN-TASTIC.

Heat intolerance is much improved. I know it's winter, but I coach my daughter's swimming in an indoor, heated pool and they have overhead heaters that just blaze down on us. If you're not wet and in the water, it's HOT. I normally would come home from the pool, unable to do much of anything and be in bed by 6:30 pm. This week I've coached, come home, cooked dinner and have been up until 10 or later, no problems. The true test will be this coming summer.

Double vision is gone! I still get a slight bit of blurriness in the afternoons some days, but compared to the severe DV I lived with for the last 7 years, this is truly NOTHING. As I drove down the freeway last week--ALONE---I actually became tearful from joy. I was independent and confident again.

There ARE downsides...as with everything. I'm still mostly bald, but am getting soem downy hair growth again. I went radical and left my hat in my purse today. It felt good.

Also, it seems the chemo likely caused ovarian failure, as I now have some pretty intense hot flashes. Whether this is temporary or permanent is unknown. I am approaching menopause age, so it doesn't matter much to me. I do know of those with MS who have done this treatment and have gone on to have babies, so this is an individual thing, and chances of "chemopause" increase with age. Again, a good trade off for me.

My blood counts are still not yet recovered. My WBC's are especially low, but I also had some pretty intense and prolonged neutropenia during the whole process. My oncologist assures me this is normal, and I will just continue taking care to avoid germs, as I always do.

Hope this helps.

Thanks for the update, and I'm so glad to hear the good news! What a radical treatment that was. How wonderful that it's doing you so much good! Hooray!

Abby

I'm amazed! I hope to hear more in the future that you are in full remission. I think this may be a radical, but possible treatment for us out there who have trouble controlling our symptoms with meds. Thank you for sharing your story!
Jessica