Beth struggles continue

    • Anonymous
      July 17, 2008 at 1:08 pm

      [SIZE=”4″]/SIZE] Hello to all and to all the new ones. Sorry, I haven’t been able to answer or post very much lately. Since being out of the hospital things have not went well. MD’s are not happy with my response to treatment and are changing meds, going to insert a perm port and do phressis every other week to see if we can get things under better control.
      I have went back nine months in strenght. Having truble getting up to a walker to get from room to room. Eyes are giving me a lot of troule, hopoefully is all of the new meds I’m on is what is causing the eye sight problems. . Now on 4 cardiac meds.
      Scheduled for more testing.
      I do think of each of you daily and pray for you.

    • Anonymous
      July 17, 2008 at 1:34 pm

      Hello Beth. Am sorry to hear of your struggles. Hope today is a little better. This is a wonderful family to be in, and will be praying for you. Take good care of yourself. Emma

    • Anonymous
      July 17, 2008 at 2:47 pm

      Beth, You are in My Thoughts and Prayers Hun! Take Care!

    • July 17, 2008 at 4:17 pm

      So sorry to hear of your troubles, prayers and good thoughts are sent your way.
      Dawn Kevies mom

    • Anonymous
      July 17, 2008 at 5:38 pm

      I am really sorry to hear what’s going on with you. Hopefully the Pheresis will help you though so think good positive thoughts!!! Gabrielle

    • Anonymous
      July 17, 2008 at 6:10 pm

      Lots of Prayers and Support going your Way! Keep on hanging in there! Hopefully the PP will give you some relief soon! In the meantime please know there are lots of us praying and sending positive vibes your way! 😀


    • Anonymous
      July 17, 2008 at 7:21 pm

      That is such a blow to the backside and all over.
      At least you will get a port put in. From all I’ve read and heard, that is a pretty sane way to go. From my own perspective, I’d really appreciate it as I HATE NEEDLES? and can’t watch, just ‘feel’ during the ‘process’. After four years it’s harder to find good sites and I do believe my infusion nurse takes it as a matter of pride to ‘get’ me on the first try. SIGH.
      I can understand about the ‘eye’ things…I was tested out the wazoo by a neuro-opth for my problems, which ‘whew!’ abated, but sometimes come back and they are scary as beyond HECK! Got a sort of diagnosis of ‘non-aura’ migraines for the vision issues, but as I said they’ve pretty much gone and I am not complaining about it all for sure. That testing did rule out anything extra about cardiac, vascular and a whole slew of other things….I too did go thru that 3+ hour eye exam and then another for a ‘second opinion’ from another expert.
      As for the cardiac stuff? Too many docs isolate that aspect from the other issues: one can affect the other and vice versa. Prod them gently w/’stupid questions’ about this…this way you don’t let them know that you are on to them and MISSING stuff. It can be related and it can be key and very important.
      Sure hope this helps and keep us up to date please… Shouldn’t have to go thru this stuff this way! EVER.

    • Anonymous
      July 17, 2008 at 7:59 pm

      Beth, I am so sorry to hear of you struggling. It seems you were doing so well. I am hoping and praying there are sunnier days ahead for you. Take care and keep us posted as best you can. We will all think of you and send you positive energy:)

    • Anonymous
      July 20, 2008 at 12:12 pm

      I am so sorry to hear of your struggles! Something that has been helping me tremendously to remember as I go through my own struggles is “It’s always darkest before the dawn.” I pray that the “dawn” will be coming soon for you!

    • Anonymous
      July 20, 2008 at 12:29 pm

      [FONT=Georgia][SIZE=3]Beth sorry to hear about your continuing struggle, I hope things soon get on a better track. Wishing you nothing but the best ![/SIZE][/FONT]

    • Anonymous
      July 20, 2008 at 3:22 pm

      Beth, I am keeping you in my prayer thoughts. Many hugs!

    • Anonymous
      July 20, 2008 at 4:54 pm

      Hi Beth, sorry you have to struggle so. Is your doctor aware of the difficulties treating CIDP associated with anti-MAG IgM? From what I’ve been reading in a number of references, PP, IVIG and steroids tend to be not very effective. I think I’m a good case in point. Did you discuss at all the possibility of trying Rituxan? There is a possibility that this might help — but on the other hand, it also can backfire (see my recent increase in anti-MAG IgM).

      My neurologist I saw three days ago told me it was very depressing to see a patient like me. She said after Rituxan nothing is left except chemo which was not an option because of my age.

      I am worried that your doctor might be over medicating you, three drugs for your heart condition sounds like a lot. Could it be that those are really giving you the most trouble? As I mentioned to you before, I also have atrial flutter but without any medication. That’s been going on for over a year and I’m still alive. The only medication I am taking is Micardis and a low-dose diuretic to keep my blood pressure down. But then again, I don’t really know your situation and am just trying to share what I’m doing.

      Take care

    • Anonymous
      July 20, 2008 at 5:15 pm

      Hi Beth:

      Here’s hoping that your situation improves in the near future.. I’m sorry to hear about your struggles… Take care of yourself……..deanop