Nothing is easy!

    • Anonymous
      May 11, 2011 at 6:48 pm

      I hope you can all give me a few pointers about a diagnosis of CIDP.
      I just returned from a visit with my Neurologist who has been treating me for MS since 2007. My progression of disability which includes problems walking, pain, no reflexes in my arms or legs as well as fatigue have continued to worsen.
      I have had 3 lesions mid brain on my MRI’s since 2007, but these have slowly disappeared over the last 6 months. But my symptoms have continued and actually this last 6 months the progression has sped up.
      I am on a boat load of drugs Baclofen, Ampyra ( for walking ), Gabapentin, Klonopin ( for spasticity ), Copaxone, Marinol ( pain management ) and Tramadol as needed.
      I have had EMG tests and I have Neuropothy in my arms and legs.
      My Neurologist mentioned CIDP a month ago so scheduled me for a spinal tap, the results came back negative as well as all the other blood work he tested for ( btw I am getting tired of every time I see a doctor they test me for lymes disease ). I have now been referred to another Doctor in New York who specializes in diseases like GBS and CIPD.
      So my questions are.

      Could I have been miss diagnosed with MS since 2007.
      If it is CIDP, has being treated for MS been counter productive.
      What sort of testing can they do to confirm or rule out CIDP.


      PS My Neuro mentioned IVIG today as a treatment option and may start this as a way to slow down any progression.

    • Anonymous
      May 11, 2011 at 9:16 pm


      Particularly because, apparently, an MS attack might cause, as you put it, neuropathy in your arms and legs. I suggest your EMG/NCV tests need to be done and reviewed by an expert.

      Let’s compare MS “[I]At this time, there are no symptoms, physical findings or laboratory tests that can, by themselves, determine if a person has MS. The doctor uses several strategies to determine if a person meets the long-established criteria for a diagnosis of MS and to rule out other possible causes of whatever symptoms the person is experiencing. These strategies include a careful medical history, a neurologic exam and various tests, including magnetic resonance imaging (MRI), evoked potentials (EP) and spinal fluid analysis.”[/I] Source? the MS website.

      Compare to CIDP “.[I]..The diagnosis of CIDP is suspected with a history of progressive sensory motor neuropathy. Physical examination consistent with distal sensory loss in the upper and lower extremities, in conjunction with motor weakness that can be more proximal than distal supports the clinical diagnosis…[/I]” source? The MDA (Muscular Dystrophy Association) website.

      More on CIDP “[I]…How is CIDP Diagnosed? The CIDP patient typically presents with difficulty walking which progressively worsens over a few months. Tingling or other abnormal sensations may also be experienced if the patient’s sensory nerve myelin is damaged. Physical examination will usually show loss of reflexes, such as the knee and ankle jerk. Evaluation by a neurologist will often include an electrical test, a nerve conduction velocity-electromyography study. It shows slowing of conduction of electrical signals or even blocked conduction. A spinal tap, to analyze cerebrospinal fluid, will typically show elevated protein with normal cells to help confirm the diagnosis. Patients with variants of CIDP, such as multifocal motor neuropathy, may only show slowing of conduction in some motor nerves to muscles. Your doctor may obtain blood and urine tests, including analysis of proteins, to look for causes of CIDP….” [/I] Source? GBS-CIDP Foundation website.

      For a diagnosis of MS the MS website says-

      [I]”… Analysis of the cerebrospinal fluid, which is sampled by a spinal tap, detects the levels of certain immune system proteins and the presence of oligoclonal bands. These bands, which indicate an immune response within the CNS, are found in the spinal fluid of about 90-95% of people with MS. But because they are present in other diseases as well, oligoclonal bands cannot be relied on as positive proof of MS….”[/I]

      Importantly, it seems to me, MS is a Central Nervous System (CNS) disorder. CIDP is a Peripheral Neuropathy System (PNS), or anything outside the CNS, disorder. (usually).

      Treatment- Some treatments use the same medications. For example, again from the main MS website-

      “[I]…Initial treatment of MS usually starts during the acute relapse. Several studies have found that treatment with corticosteroids can shorten the length of relapse and might even improve long-term outcome
      Cyclophosphamide, methotrexate, azathioprine and cyclosporine all have been studied in small- to medium-sized trials. An evaluation by the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and MS Council for Clinical Practice Guidelines has made recommendations regarding these therapies. Methotrexate, azathioprine, and cyclosporine were each found to be possibly effective (Type C recommendation) in altering the course of disease, but cyclosporine was found to have an unacceptable risk-to-benefit ratio. In their review, pulse cyclophosphamide treatment was found to not alter the course of MS (Type B recommendation), although a more recent clinical trial observed reduced relapses and MRI lesions in patients treated with cyclophosphamide…[/I]”

      I couldn’t say which medicines you’ve taken might be counter productive to CIDP. You are right about having a boatload of meds. I would hope to downsize to a kayak.

      Welcome and Good Luck

    • Anonymous
      May 12, 2011 at 12:25 am

      Thank you for your reply to my post.
      The more I read about demylenating disorders the more I realize that the number one tool a Doctor uses to diagnose a problem is time, especially in cases that are not cut and dry. But I have also noticed that each of us has a unique set of physical issues and this makes the whole process a lot harder.
      Over the last few years I have seen my life change dramatically, I kept working until December last year and then it became far to dangerous navigating the New York Subway system in rush hour just to get to work. Then i had to deal with the fatigue I had by 9.00am this made doing my job properly harder and harder.
      My biggest concern is with all the treatments I have had is I am still getting worse. It is beginning to really affect my young kids, it can’t be fun having a father who is unable to walk to far. But thank god I have a tremendous wife.
      I just hope this next Doctor figures out the right thing to do.

      Ps my doc says I have one thing going for me, and that would be my very Englsh sense of humor.

    • Anonymous
      May 12, 2011 at 8:43 am

      A good sense of humor will always serve you well, especially when ill. I treat at Weill Cornell Medical College in Manhattan with Dr. Norman Latov. He is the physician who finally was able to diagnose my CIDP. I highly recommend him and all the physicians there.

    • Anonymous
      May 12, 2011 at 9:45 am

      I am seeing a Doctor at NYU and I can’t remember his name at the moment. But it does have lots of K’s and i’s.
      Even in a major city like New York the list is real short of specialists in CIDP, and I have found the good guys take ages to see.
      I have resigned myself to the fact that I have become the medical play thing of any Doctor I see ๐Ÿ˜€ .
      I think the next medical person who suggests a spinal tap will get a beating, unless they have one right before me.
      I sit here typing this on my deck at it is a beautiful day here in New Jersey. My fingers are beginning to tingle, My legs hurt and I am going through a period of major fatigue. But I am the right side of the grass and intend to keep it that way for as long as I can.

      Thank you for your replies.


    • Anonymous
      May 12, 2011 at 12:00 pm

      [QUOTE=flipper]I have resigned myself to the fact that I have become the medical play thing of any Doctor I see ๐Ÿ˜€ .
      I think the next medical person who suggests a spinal tap will get a beating, unless they have one right before me.
      I sit here typing this on my deck at it is a beautiful day here in New Jersey. My fingers are beginning to tingle, My legs hurt and I am going through a period of major fatigue. But I am the right side of the grass and intend to keep it that way for as long as I can.

      Thank you for your replies.


      Welcome Phil,

      Your sense of humor as well as finding the positives in this situation is inspirational. I actually giggled at work when I read about beating the next person that suggests a spinal. My poor co-workers are probably afraid I’ve taken too many happy pills. ๐Ÿ˜‰

      Praying that you receive a proper diagnosis and treatment soon!

      Take care,


    • Anonymous
      May 12, 2011 at 12:58 pm

      I had my Spinal Tap the morning William and Catherine were getting married and being English by birth and accent, every Doctor and Nurse started to grill me about the big event.
      So there I was lying in an Xray room with my not so hairy butt sticking out of my surgical gown, ( thank you unknown nurse for saving every part of my body that was exposed ) and I am getting bombarded with Royal wedding questions and I could not help myself and I started to laugh about being semi naked with a needle in my back, with my shaved nether regions hanging out for all to see. The Doctor started to give me a hard time about staying still, until she noticed my spinal fluid came out faster when I laughed. So Doctors orders were to keep laughing.


    • Anonymous
      May 13, 2011 at 10:03 pm

      I went thru the CT’s and MRI’s and all… and was asked about a ‘lesion’ …
      I really had to do a ‘replay’ of my whole life to remember I’d had one whopper of a concussion long ago. Actually two. decades apart. Car crashes, falling on the sidewalk and hitting your head or such can do it as well.
      IF you were a kid? And fell out of a tree? & then had a concussion? It shows up as a lesion. Once healed, these don’t ‘change’.
      There are two kinds I believe, static and active lesions. The static ones are lke my concussion. The active ones are more prevalent in such things as MS, and are subject to further scans to look for changes.
      Where CIDP nerves are destroyed by our own immune systems? The MS folks get the lesions doing similar things in the brain thus affecting how the nerves work. Similar actions, different places of activity.
      Loved your descriptions about the ‘royals’! I live not too far from DC and I tell you? No one ever asks me IF I’ve been invited to a White House Affair! And, to be honest? I wouldn’t want to!
      Keep laughing! Beats other options! Good luck! And, don’t forget that what tests show now? Might be quite different in 6-9 months! Sometimes it takes a while for things to really show up and/or run rampant!