how bad were your symptoms before trying IVIG

    • November 9, 2011 at 3:20 am

      Hello all! I’m currently awaiting an official diagnosis, but my 1st neuro thinks CIPD.. but wanted to wait on the IVIG until things worsened if they did.. I was curious how bad yalls symptoms were before trying a treatment. I have difficulty walking, but can walk (though it feels like i have concrete in my shoes) have lost my dexterity and fine motor skills.. base of thumbs don’t work right and tips of all fingers are “gummy” feeling.. also now swallowing and speech feel like they are becoming affected (numbness from toes up to chin now).. Just not sure how long I am supposed to sit around and wait… I really want to get better as of yesterday!!! thanks for your time!

    • Anonymous
      November 9, 2011 at 9:04 am

      I was started on IVIG as soon as I was diagnosed. I was told the earlier the treatment, the better chance of remission. I noticed you said you did not have a diagnosis yet – I hope you get a definitive answer soon.

      I did not have as much damage as you when I started IVIG. I had a lot of numbness in my legs (knees down) and no strength in my hands. I had horrible full body cramping each night. I did fall down a lot (lack of feeling in the legs and I didn’t always lift my feet off the ground enough – LoL – I became a character in a slap stick comedy!!!) I received a cocktail of meds for the cramping and pain and the IVIG to treat the actual CIDP. It helped me for several years and kept the CIDP at arm’s length – I continued to work, go dancing, do my chores, etc – live my life as I had before.

      This sometimes is all someone needs. Unfortunately for me, the IVIG quit working. Tried some other things that did not work, then ended up doing the stem cell transplant as I was running out of options and time (I’m in my 60’s).

      I hope you get answers and treatment soon!!!

    • Anonymous
      November 9, 2011 at 9:09 am

      Don’t sit around and wait if you notice anything worse with breathing, go to the ER.
      If the numbness from toes to chin and swallowing and speech being affected is new since you last saw Dr. you need to be seen, go to ER if you keep getting worse and can’t see Dr. soon.

    • Anonymous
      November 9, 2011 at 4:43 pm

      My husband was misdiagnosed with carpal tunnel by his first neurologist. By the time he was seen by a neuromuscular disorder neurologist, he could not use eating utensils or turn a key in a lock. He has no thenar muscle and has a very atrophied forearm. While waiting for IVIG, he developed foot drop. He has responded well to IVIG every three weeks, but the damage that was done is not repairable. He has half the strength of normal in hand and foot. He has no sensory symptoms–only motor. 3 years of improper diagnosis and all that damage occurred. He was quite depressed for awhile due to that.

    • November 10, 2011 at 3:43 pm

      wow… it really helps me hearing all that yall have been through and yalls stories.. and i’m so glad it sounds like everyone is on the mend, and doing much better.. I am pretty scared right now.. I have started having tongue twitches.. speech is worse and swallowing is worse than it was a few days ago.. I’m headed to the neurologist here in the next hour, he wants to do another EMG/nerve velocity study (the first one I had was performed by a physiatrist, and this neurologist thinks it was a poorly performed exam) Now with the tongue twitching im completely terrified its something like ALS.. did any of yall have twitching in your tongue?? I have my two kiddos under the age of 2 years here, my hubby is going to watch them while I go to my appointment, needless to say i’m scared to go alone.. i’m just scared in general.. I’m hoping they think CIPD or something manageable is in the differential diagnosis after this EMG..

    • Anonymous
      November 10, 2011 at 6:57 pm

      My local neurologist performed a Nerve Conduction Test in his office early in my diagnosis. He said it was completely normal.

      Later, when I went up to Johns Hopkins for a second opinion they sent me to their folks who re-did the Nerve Conduction Test. This one was in a very advanced setting with obviously more sophisticated equipment. It was actually pretty painful when they stuck the needles in my legs.

      The results were totally abnormal. My Hopkins Neuro couldn’t understand how the first test from my local Neuro could possible have been “normal.”

      So… there are Nerve Conduction Tests and then there are other Nerve Conduction Tests.

      Good luck with the diagnosis.

    • November 10, 2011 at 9:46 pm

      phew…… well thank goodness!! 2nd EKG performed by a neurologist who did a more detailed study than the first guy (a physiatrist) said No Als…. best words i’ve ever heard my entire life! He is the same neuro that had looked at the “bad” emg, along with physical exam and thought maybe cidp… however the EMG was clean.. no motor or sensory deficit, so he doesn’t think CIDP anymore (otherwise I think we would have gone down the IVIG road sounds like). but he thinks its now benign fasiculation syndrome, or isaacs syndrome.. and put me on an anti epileptic drug. Since i have no “clinical” weakness he thinks maybe my fingers are just stiff like in isaacs syndrome.. so we’ll see, hpoefully this medicine will help. good news all around!
      Thank yall so much for all of yalls help though, yall have been wonderful!
      rdball- i know not only are neurologist so subjective on their exam (one can say my reflexes are normal, one slow, and one brisk etc), but an EMG/ncv test is so much up to the performers skill and interpretation.. ugh! I think thats why after that first EKG and one person telling me it was a poor study , that I began freaking out again a little bit!

      Thanks again and good luck to all of you!

    • Anonymous
      November 16, 2011 at 11:41 pm

      By the time I was diagnosed about 3 months had elapsed since my symptoms started and by then my legs were jello – I was not able to stand from a sitting position. I was speaking at a conference in DC and the elevator at the hotel was not working and were on a high floor. I panic’d on the stairs not able to go up or down. I reschedule my flight and went home barely able to walk to the plane.

      I had my spinal tab and first emg in the end of August 2000 and start IVIG a week lately – daily for about 10-14 days.

      I have been on constant IVIG since. I was retested several times at the Mayo clinic with diagnosis and test staying the same until last year when for some odd reason the CIDP hit my arms and hands with a vengeance leading to an August retest of my arms and hands which showed severe damage.

      Mayo noted my case as atypical since my arms and legs have been impacted at different levels at different times. I have ivig every two weeks.

      They took me off Lyrica after many years due to edema.

      I know I was fortunate to get a quick diagnosis and have heard so many stories of folks that wait forever!

    • November 17, 2011 at 3:17 pm

      wow, all of yalls stories amaze me!! I hope that treatment has found yall some great improvement from it all! thanks again for your replies!!