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  • Is your hair falling out? I had some problem with that also, doc said had nothing to do with the disease, but it improved as of late..
    saying hi from a old friend.. We have known each other a while now.. sorry about your fall, but liked the way you approached it.. lol..
    Hi Sammantha, things are still 'bout the same here, enjoying the last few days of the kids' summer break. My walking is worse, other than that things are about the same. I'm in the Dexpramipexole clinical trial so I go to Boston every other month for that now. And I switched over to the UMass Clinic in Worcester. Decided to get another EMG before going back to see what's going on.

    HOw are you doing? Check into the NP001 Clinical Trial, they seem to have been having amazing results. Kinda wish I went onto that one, but it's more invasive (intraveneous), and I already started the Dex trial as well. Not sure if it's helping or not, but I feel ok, just can't walk right!

    Hope you've been enjoying the summer and are feeling fine. Check out the "Come for Tea" thread to get an uplift to your day.

    Take care sweetie!
    Sammantha, how are you, I haven't seen you posting for a while, or maybe its because I'm always on the "come for tea" thread. Hope all is well with you, and you're enjoying this beautiful spring weather!
    Hi Sammantha, good to hear from you! Getting pissed off is a good thing, it lets us know that we're still here. Seriously, your post touched me how lonely you seemed, and I know exactly how you feel. Thank God for my kids and my Mom, a bit less so for hubby, who's NOT stepping up to the plate though he cried like a baby when he found out about my initial diagnosis... which hasn't been 100% confirmed, so I'm holding onto that. It would be nice to have someone I could talk to about the different tests besides my 85-year-old Mom, who's become a caregiver for my step-Dad this year as well. Thank goodness for a couple of friends who have gone with me to some of the initial tests in Boston, so I didn't have to go alone. I was so overwhelmed at first. I still can't talk about it to some people, and other times I can. I guess it depends how much I feel its true.

    Keep me posted how you're doing... and let's give our hubby's a good kick in their butts!
    Just wanted to say, having read your "Day After Christmas" post, I want to know how you're doing. I feel blessed in having a husband who knows how to care, Sammantha, and your post really hit me hard. So, I'm grateful, but very concerned about you. I hope you continue to post. So, looking below--You have insurance again? Hope so. Hugs for now, Ann

    We had wonderful weather, just a fantastic vacation, and really did not even have that much traffic woes during the exodus. How have you been? Send me a private message some time and let me know. I'm so sorry I missed your birthday. It slipped right past me. I hope to hear from you soon, lots of love, D xx
    I have no insurance, just got the letter today. We had to choose between having my husband take me off the company insurance or him losing his job. I live in a right to work state. My doc said i should sue under the Americans with Disability Act but how does one afford a lawyer, and oh yeah i have no diagnosis so what would i say they are discriminating against? My doc had me do a full body MRI, another somatensory, pulmonary functioning, physical therapy, copper levels by a neuropthamologist because copper deposits can cause upper motor neuron symptoms and finally a spinal tap. All normal. Except my breathing and excersizing problems and EMG coupled with clonus and spasticity. I really do like my doc he is trying really hard to come up with another diagnosis, the thymoma turned out to be hyperplasia. So that is where i am at now.
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