diagnosis woes

    • Anonymous
      June 1, 2008 at 12:58 am

      I got a second opinion on my Cidp dx at Emory last month. The Neuro basically said I was an anomaly.
      I have severely slowed nerve conduction, muscle atrophy in my feet, some axonal damage, and fatigue throughout my legs.
      However, my emg was unremarkable, spinal fluid was o.k., nothing on the the MIR, plus I still have strong reflexes in my legs.
      While at Emory I was tested for CMT, and it came back negative. I have also had the Athena Labs panel for the paraprotein neuropathies, which came back negative.
      I did a 5 day course of IVIG back in April, with no improvement. the recommendation was not to continue with IVIG. He does not think it will do me any good. He wants to do another NCV and see whats changed since my local Nuero did it back in October.
      So… it seems that I still have more questions than anwsers.
      Has anyone experienced anything similar?

      Thanks for your thoughts.

    • Anonymous
      June 1, 2008 at 3:14 pm

      [FONT=”Comic Sans MS”][SIZE=”2″]Charles,
      How utterly frustrated you must be, no matter how scary [I]sounding [/I] the name of a disease or syndrome, putting a name to it gives comfort somehow, if that makes sense to you.
      I’ve learned through our friends here on this forum that the only consistent about GBS/CIDP is it’s inconsistency! No two of us seem to have the same symptoms, but many similarities.
      I am fortunate that when i was finally diagnosed it was at a large teaching hospital in reasonable distance from home, and that i’ve been with the same group of wonderful Neurologists ever since.
      What medications are you taking, and how much mobility do you have?
      Wishing you the best,

    • Anonymous
      June 1, 2008 at 5:35 pm

      Thanks Veronica. I am not on any meds. My initial dx of cidp was in 2003. Very mild symptoms, mostly numbness and tingling in my feet.

      In the past year the symptoms have moved up and now effects my upper legs. Mostly, muscle fatigue and twitching. My legs always feel like I have just climbed a thousand stairs so to speak. I also grow tired very easily.

      I still work a full time job, and I’m on my feet for the most part of the day.
      My fustration is not knowing what to do to stop or control the damage being done


    • Anonymous
      June 1, 2008 at 9:02 pm

      [FONT=Book Antiqua][SIZE=3][COLOR=purple]Hi Charles,[/COLOR][/SIZE][/FONT]
      [FONT=Book Antiqua][SIZE=3][COLOR=#800080]I have similar story. Was diagnosed in 2002, symptoms were minute. Mostly exhaustion, ankle weakness, lack of sensation in feet. My hands were atrophied but still pretty strong. NCT showed the CIDP but no protein elevation and everything else looked good. I was told I have a slow progressive form of CIDP and treatment was not started until a year ago. IVIG was unsuccessful as was Celcept so we are using Methotrexate now. I am finally getting some results after a full year of being on it. I have found that this diagnosis does not come with many guaranteed answers. It has all been trial and error. And I also have learned that nothing is out of the question in terms of what CIDP can affect. I relate to you when you say it feels like you have walked up 1000 steps. I also describe it as having bricks around my ankles. Orthodics have helped. I wish you luck and hope you stay in touch. Any help I can offer is yours.[/COLOR][/SIZE][/FONT]
      [FONT=Book Antiqua][SIZE=3][COLOR=#800080]Linda[/COLOR][/SIZE][/FONT]

    • Anonymous
      June 2, 2008 at 9:36 pm

      Hi Linda, thanks for your reply. It does sound as if our cidp journey has been similar. I’m glad to hear that you are making progress with your treatment

      I did get some encouragement today. My neuro at Emory called last friday night to tell me the test results were negative for cmt. He told me to call back today and tell his assistant to “fit me in” for a NCV and consultation. I was blown away when she asked if I could do it next tuesday!
      I anticipated it would take a couple of months to get scheduled. Made my day, though.

      Hopefully, he will be able to determine a new course of treatment, and get things started. Waiting is the hardest part.

      Grace to all

    • Anonymous
      June 5, 2008 at 1:27 pm

      [FONT=”Comic Sans MS”][SIZE=”2″]Charles,
      Excellent news, hope you get started on a treatment to stop the progression as soon as possible. have you looked into plasma pheresis?
      It worked a treat for me, so i always kind of promote it.
      You mentioned that you were tested for CMT, what is that?
      Wishing you the best

    • Anonymous
      June 6, 2008 at 3:07 am

      I’m in Atlanta near Emory. Congrats on scoring an appt Tuesday!!!!

      Yes, my CIDP started years ago and was almost unnoticeable (med notes say I had reflexes at the same time I had intermittent numbness and tingling). Now, the CIDP has increased exponentially, over the same timeframe you mentioned for yourself.

      I don’t know what made it rear up like it did, but it now dominates what is left of my life. And to think it was only “fuzzy feet” and “tingling hands” a few years ago.

      You may be in that beginner’s stage the others mentioned. At $25K per bag of IVIG, let me guess at why IVIG might not be prescribed much longer. All Atlanta hospitals are under the “IVIG allotment war” pressure. I think everyone on this site (and I hope they chime in) would agree that such a short time on IVIG isn’t enough time to evaluate its potential helpfulness to you.

      Also, my EMGs, done Nov 07 and Mar 08, are normal, as others have stated about their EMGs. The Nerve Conductions on the same days shows more slowing even over those few months, so go get them done again next Tuesday. What’s a little electrical shock among friends? There is no way to fool those machines. They measure to the milli-second. It’s one thing disability boards have to take seriously.

      CMT is “Charcot Marie Tooth”, right?

      All my Athena Labs tests were negative too, but those are exotic tests and they dont’ cover all the auto-immunities you might have. A word about the more mundane tests.

      I know you were tested for Vit B 12. What neuro would leave that out, but it was probably done in Oct. 07, like mine. Mine was borderline low, despite ORAL supplements, but since folic acid (folate) is something almost everyone takes now, go to Google (don’t trust me) and see that folate can make the Vit B12 level look higher than it really is. Did my levels again last month, after more efforts to bring them up and still they were going lower. Why assume anyone should flirt with just barely normal levels when a few B12 shots could make a neurological difference? The normal range is 200 to 1,100. Wouldn’t it be nice to know if a level of 800 made you feel better than 250? Ask your doc for real numbers, not just “in the normal range”. (And how do you know that your levels weren’t 900 a couple of years ago?)

      A B12 deficiency causes virtually the same neuro symptoms, is usually the first test any neuro would order, and is the oldest test in the books for these symptoms. Why? Because a doc won the Nobel Prize for his discovery around 1900 for the cause of the neuro disease caused by lack of B12, and found a way to stuff raw liver down people to get “some” of it absorbed and actually cure a fatal neuro illness at that time (high “yuck factor”). Now we know some people have the autoimmune B12 deficiency from lack of being able to absorb it because they lack Intrinsic Factor, and need injections of B12 because the oral route of really high doses won’t get it absorbed.

      Warning here. Important. Most medical people only read the first supposed definitive test for B12 deficiency which is the simple CBC (about $1.25 cost) where the diameter of your red blood cells tells if you are deficient (large red blood cells not good). But, it’s the next thing that’s forgotten. “Neurological” problems can be experienced as a result of B12 deficiency long before the red blood cells size changes warns us (sort of like a dummy light going off after the car engine overheats). Don’t let anyone tell you you can’t have low B12 because your red cells are normal sized. I fell for that a year ago.

      I’ll let you know if the Vit B inj make a difference. This deficiency may be one auto-immune disease (both sisters have it), but as my neuro warned me on the first day, having one auto-immune disease makes us more, not less likely to have more, like CIDP. And people with CIDP could have a simple B12 deficiency without auto-immunity, just because we don’t eat well (even though B12 body stores can take 3-4 years to get depleted). The test to check diet caused vs auto-immune caused B12 deficiency isn’t used much now. It’s just corrected and injections first if there are neuro signs of any kind.

      Who says we can’t have more than one thing making a neurological impact? We socialize, play, exercise, plan and enjoy less while enduring criticism, doubt, humiliation and misunderstanding. This is a huge neurological impact no matter how much we try to minimize it. Lots of “neurological” problems can add up to a confusing picture for scientists wanting an exact fit.

      Stick to your guns even if you lack the energy to hold them up. Let all of us know the tests results.

    • Anonymous
      June 6, 2008 at 10:00 pm

      Hello Veronica. As Osler stated CMT = Charcot-Marie-Tooth, a genetic neuropathy. I was glad that the test was negative, I would hate for my son to have to worry about passing it down to the grandkids. Thanks for your encouragement.

      Osler, thanks for all of the info. There is a lot there for me to digest. I will defiantely follow through on the B-12 issue. I will ask the doc to review the numbers from all my bloodwork. My wife recently suggested that perhaps a B-12 shot might help with my fatigue. Like you said, my level may be in an acceptable range, but way down from where it once was.

      As far as the IVIg, my Neuro here in Greenville rx’d 6 months of infusions, with 5 infusions each month. My insurance o.k.’ed it as well. After the 3rd day I got sick as a poisioned pup. Fever, terrible headache, and some kind of respiratory infection that I picked up to top off. Had to take a 6 day course of prednisone to get back to “normal”. Not a good experience.

      I’m not sure why, but as soon as the Doc at Emory reviewed my med file, he said “IVIg’s not going to do you any good”. It was such a miserable experience I guess I was relieved at the thought of not going through it again. I will ask him tuesday, specifically, why does he think I will not respond. His inclination was to put me on a low dose steroid treatment, but wanted to rule out CMT,before making that dx. Evidently, CMT and steriods are a bad combination. Plus, I am very apprehensive about doing steroids ,anyway.

      Hopefully, doing a current NCS, will shed some new light on whats going on.

      Are you currently taking IVIg, if so, how long did it take before you experienced any improvement? I would really like to know how the B-12 injections go for you.
      Also, if you don’t mind, are you seeing an Atlanta area Neurologist?

      Thanks again for the info.