What other tests do you get?

    • Anonymous
      April 7, 2008 at 11:48 pm

      I was just wondering if you guys are getting any other testing done with IVIG? I get once a month doses of Gamunex, but don’t have any blood work done except once a year. Should I be getting tested or monitored in some way?

      Also, does anyone get physical therapy? I’ve had CIDP for 12 years now, same neuro, but have never had any pt. What are your thoughts?

      Thanks for your help.
      Kristen
      http://www.cidpandme.blogspot.com

    • Anonymous
      April 8, 2008 at 10:29 am

      Well getting PT depends on the patient, their insurance & if you need it. If you feel that you would benefit from PT then just ask your neuro to write you a rx (and get a referral if necessary).

      Some people get once a month blood draws to check their CBC & renal & kidney function. I would think since you only get IVIG once a month that you could get the tests maybe every 6 months. Again talk to your neuro & ask what his/her protocol is regarding blood work.

      Good luck,
      Kelly

    • Anonymous
      April 8, 2008 at 10:43 am

      i had a blood test for cbc and immuneglobulina’s prior to every ivig tx.
      i have been in pt/ot regularly since dx in nov 2007.
      i requested it from neuro.

    • Anonymous
      April 8, 2008 at 9:43 pm

      Just curious, Beth…

      Why did you ask your neuro for pt? Did you think it would help or did your neuro give you reason to feel it would help? I just get so stiff and tight. I’m not disciplined enough to exercise on my own and not even sure what would be beneficial for me to try.

      Why does your neuro test you every month prior to IVIG?

      Thanks to everyone for answering all my silly questions. I’ve hovered this forum for awhile, too chicken to ask questions. Now they’re just coming out all over!

      Thanks!

    • Anonymous
      April 8, 2008 at 11:16 pm

      Oncologist wants to know what my Complete Blood Count is and what my auto-immune anti-bodies are. So she does and IgA, IgG, and IgM prior to infusion.
      My IgM has been as high as 1500 and is now down to 800. Normal is under 250.
      I had always been an active person and was used to exercising with weights prior to symptoms starting in Sept and dx in Nov 2007
      It made me a little sick to my stomach to watch all of my muscles shrink and become very weak. So, I requested PT/OT to maintain what I had left and hopefully improve some.
      I do a lot of stretching and some strength training, if one can call two pounds strenght training.
      Guess it also makes me feel as if I’m doing something to help myself.

      PT/OT is on hold until sometime in May and I will see how independent I’m am at present getting back to exercising. No one to urge me on so to speak.

    • Anonymous
      April 9, 2008 at 11:55 pm

      Thanks for your response. I’m curious about the blood work and will ask my neuro next time I see him. I’m actually thinking it might be time to try someone new. The thought of having to go through all the testing again is a bit overwhelming though.

      Have a great night! Hope you do well w/o pt.
      Blessings,
      Kristen

    • Anonymous
      April 10, 2008 at 2:40 am

      Kristen.

      I get a slew of blood tests each month, they are drawn before my IVIG is given to me. From what I know there are several levels that my Neuro. monitors each month, he only calls if there is an issue.

      Once a year seems pretty crazy though, there are many things that can be caught early through bloodwork. My anemia was caught through a monthly blood test.

      Talk to you Neuro., most people I know with GBS/CIDP are getting blood tests much more frequently.

      Jerimy

    • Anonymous
      April 19, 2008 at 5:12 pm

      I’ll definitely check with my neuro. I’m waiting until my next appt. and will go from there. Thanks for your help!
      Kristen
      [url]www.cidpandme.blogspot.com[/url]

    • Anonymous
      April 21, 2008 at 7:18 am

      I’m probably not the one to answer this b/c I’m waiting to see another dr.

      When I was first being tested they took blood for every possible thing…from Lyme disease to MS, metals, etc. Also had the horrific lumbar puncture. And a few EMG’s.

      When I was put on IVIG I never had any further blood work….not once.
      I had a series of Xrays to look for Myeloma and that’s the last test I had.

      I have come to realize I have permenant damage and things are progressing very slowly…I need a new dr. I go in May.

      best wishes.
      Stacey

    • Anonymous
      April 23, 2008 at 10:46 am

      I just started my first IVIG treatment this week 🙂 . I am supposed to be getting blood work done every 8 weeks. I have been told this is mostly to monitor my kidneys for potential side effects of the IVIG.

      My neuro was kind of unresponsive to my needs so I went back to my primary care provider and they gave me the PT referral I have also been doing PT for the past month to try and keep from losing more muscle. I have lost about half of the muscle on my left calf in only a few months, enough for my pcp to get a little worried so that helped get the pt referral. The PT sessions really wear me out. However, my physical therapist has said my bad leg (the left one) has begun to get stronger than it was during my initial assessment. I figure that I am already hurting over most of my body so the pain from the pt doesn’t really hurt that much more.

      –Ian

    • Anonymous
      April 24, 2008 at 9:13 pm

      [QUOTE=ConnorZmom]I’m probably not the one to answer this b/c I’m waiting to see another dr.

      When I was first being tested they took blood for every possible thing…from Lyme disease to MS, metals, etc. Also had the horrific lumbar puncture. And a few EMG’s.

      When I was put on IVIG I never had any further blood work….not once.
      I had a series of Xrays to look for Myeloma and that’s the last test I had.

      I have come to realize I have permenant damage and things are progressing very slowly…I need a new dr. I go in May.

      best wishes.
      Stacey[/QUOTE]

      Hi Stacey!

      I’m just curious…How long have you received IVIG? What made you seek out a new doc? Why were they looking for myeloma?

      Blessings,
      Kristen
      [url]www.cidpandme.blogspot.com[/url]

    • Anonymous
      April 24, 2008 at 9:18 pm

      [QUOTE=iallison]I just started my first IVIG treatment this week 🙂 . I am supposed to be getting blood work done every 8 weeks. I have been told this is mostly to monitor my kidneys for potential side effects of the IVIG.

      My neuro was kind of unresponsive to my needs so I went back to my primary care provider and they gave me the PT referral I have also been doing PT for the past month to try and keep from losing more muscle. I have lost about half of the muscle on my left calf in only a few months, enough for my pcp to get a little worried so that helped get the pt referral. The PT sessions really wear me out. However, my physical therapist has said my bad leg (the left one) has begun to get stronger than it was during my initial assessment. I figure that I am already hurting over most of my body so the pain from the pt doesn’t really hurt that much more.

      –Ian[/QUOTE]

      Hi Ian!

      I’m glad you seem to have a good primary care doc. What type of pt do they have you doing? I requested pt right after being diagnosed, but only went twice. The pt said I wasn’t strong enough to get through my day AND do pt, so I’d better just work on getting through the day! I think I need pt now and plan on checking to see what my insurance provides.

      Many blessings,
      Kristen
      [url]www.cidpandme.blogspot.com[/url]

    • Anonymous
      April 25, 2008 at 2:14 pm

      Hi Kristen,

      They tested for myeloma, I guess to rule it out. And I had IVIG several times over about 6 months. Some were the five day loading…actually most were and then a few one day only infusions every so many weeks. No indication that it helped, although, I did not get worse. I had side effects and we stopped and tried prednisone. Never again with that.

      I am seeking a new dr for a second opinion. I was told at my last appt recently to come back in 6 mos unless things worsen. I just want another opinion to make sure this “waiting” is ok to do.

      Stacey

    • Anonymous
      April 25, 2008 at 6:02 pm

      Hi Stacey!

      It seems strange to be told to “wait” when you’ve been diagnosed with CIDP, but I’m [I]definitely[/I] not a doctor. If I had to wait longer than 30-40 days, I’d be a mess! Glad you’re getting a second opinion. Hope you have a great weekend!

      Many blessings,
      Kristen
      [url]www.cidpandme.blogspot.com[/url]