Added: 2 months ago
From: MSVlogSupport
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  • Take care Andrea, my thoughts are with you.

  • Hi Andrea, sorry to hear you are having a rough time. Sometimes Tysabri takes a while to kick in (that's what they told me anyway). I hope you find the right treatment for you soon. And I hope you have a happy Christmas if I don't speak to you before then. Amanda.

  • Same for me, I never got the 'boost' or felt I was ready for another infusion. It was a mystery to me. Not sure if that means anything or why it never worked for me. I am sorry MS is continuing to beat you with a stick - it really is unkind :( I hope the botox helps. Big hugs. Kerri xo

  • another thing i have positive things about is coral calcium (dont get fake product, Dr barefoot must appear on lable). I only take one a day & i love how it makes me feel, im told it can help with pain from nerve problems too. this is NOT spam.

  • constant pain really robs your life & leaves you exhausted just getting through the day. I had siatica down both legs, then out of desperation i found hematite bracelet for pain. The trick is to wear it until it starts to work. took 6 days of wearing 24/7, after that i was 100% free of pain! im never without it on my wrist. For some reason it doesnt always work for my nerve pain in arms & hands, i can relate to you there, that pain / numbness is pretty intense, but usually doesnt last too long

  • I do not have a diagnosis but I know the pain you are describing and I know it is hard to describe as well. Not have a diagnosis the dr doesn't take mine seriously. I am on no mess for anything. I'll keep you in my thoughts n prayers. Hope this goes away soon! And you are of help to me because now I know I am not the only one as I have the neck problems and the problems in torso n thighs like you. God bless n get well soon!

  • @milindasuek I feel for you on the no diagnosis thing, it's severely frustrating! I have 2 nueros, one doesnt have a clue, the other thinks all my symptoms are from a pinched nerve in lower spine (which ive had for 20 years)... pompous IDIOT!

  • Hi Andrea. The last time I spoke to Dr Tom Gilhooly in Glasgow he said they were working on "alignment" or head and neck position, with a physiotherapist. Its their new thing. Even suggested it might be an alternative to venoplasty. Am still going back to Belgium for that tho. Are you satisfied with your blood flow? Had follow-up doppler scan? Think this story has a way to go. All the best,

    Paul

  • hugs Andrea, I know it's tough to try to feel positive when you don't feel well at all. Keep us posted... xoxo

  • Hi Andrea! It's so good to hear from you! I'm so sorry about all these other symptoms...it sounds horrible.

    I know you're not a big fan of drugs but I can understand how you would try anything at this point! Good luck and I hope you get some resolution.

    Sandy x

  • I just sent you last night a hello on FB. Am sorry your not doing well, I have been pretty bad off myself since August and know the cold temps and dampness are adding insult to injury, as I don't do well in the cold and I think you said its not your favorite either. They have messed with my meds too with no help. I have gotten some relief from the pool. This is one of those places where words just can't say enough. Your in my thoughts and prayers weather you like it or not. xoxo susan

  • @ThePennygirl H i Susan, your right the cold is my enemy as well. What a bunch of crap we deal with ;-) I think of you all the time as well!! Big hugs to you and your man!

  • Hi Andrea, I am sorry to hear that you are not doing well even though you are taking their wonder drug. Is this the "Something really good" that I was told would come out in ten years over 12 years ago? I have found that more meds is not the answer for me. Less is better in my opinion. Take care.

  • @tazscott14 Hi Bill, like I said I don't think the tysbari has anything to do with my problems right now. I was a just say no girl myself, but I can't tolerate this much more. So willing to try the drugs and see if it will help. I can't put in to words how horrible this feels. But i do understand where you are coming from.

  • Sorry to hear your MS symptoms are bad, Andrea. I have heard a lot of good things about Botox therapy.

  • @vbeachy Thanks Vern, any relief would be welcome right now.

  • Good to see you again A - sorry it's not under better circumstances, eh. These wonky webcam effects are actually pretty atmospheric - you're in the twilight zone! MS can be sooo draining, I know - it's easy to sympathise with much you say here. I really hope you get a break sooner rather than later x

    Hey, I thought I had trigeminal neuralgia this week - but it turned out to be an abscess under my wisdom tooth. This counts as good news ;-)

  • @lovingfatalist Awe Toby you always bring a smile to my face!

  • Hi Andrea, I hope you can get into that study & it helps you. There's been so much going on in my realm lately, I haven't been able to keep up to date on anything. I wish you all the best in what ever you choose/have to do. God Bless, thoughts & prayers always.

  • @damizia Thanks Mike, I know that you have a lot on your plate as well. Best to you and your famliy!

  • Hi, have missed you so much & been thinking about you. I'm so sorry your MS symptoms are so bad and you've been suffering. I'm so disgusted by the corruption in the healthcare system. Decisions made about care by non medical professionals who only care about their bottom line dollars. They are killing people & destroying any good healthcare. I just don't see where anything they allow is helping anyone come closer to getting better. Love you so much and you know I am just a phone call away.

  • @donotconcede Thanks Judy I know I can call anytime :-) Just not in a talking mood these days.

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