CIDP since 1995, IVIG since 2003 Very scared by MRI

    • Anonymous
      April 19, 2011 at 5:18 am

      I would like to apologize in advance for what I think will be long. I will try to give you the specifics in bullet point.

      Here are my stats:
      44 yo female, crazy-in-love married for 10 years this Thursday (and yes, you all know this pain, Thursday is a treatment day!
      My husband retired in 2006 after several falls and a trip to the ER for a stitched up lip, boo! He is wonderful and supportive. I have had to divorce my mother because she doesn’t really think anything is wrong with me and doesn’t know what the fuss is?

      I used to work in the Medical department of a Pharmaceutical company specializing in Oncology prior to having to leave on total disability. Most of the work I did during my 18 years in the industry was with MS/ALS and various types of cancers. I did a lot of clinical trial work and interacted with many “thought leaders” in Neuromuscular Medicine. I loved it, until I started to have to see the same men that I was working with professionally(there was only one; fantastic female fellow, I asked her to do my EMGs.)

      I was fortuate enough to work in the Boston area so my physicians were wonderful. I believe this is one of the reasons I was given a diagnosis so early on. As you read on I am wondering about this diagnosis, loose and “probable” as it was and I’m scared.

      April 2004 I had to go out on total disabililty. My job required a lot of travel and I was unable to take care of my luggage etc. I also was receiving IVIG every other weekend, both days and I had to work one of the other two, usually out of t own. I had 4 days off a month but I made it work for over a year. I even went through a 6 month chemo regimen and just took off two months. I know it was way past when I should have left but my company was so great to me, they let me come to the decision, even though I was missing a lot of work and not attending meetings that required long travel.

      I’ve been on IVIG since March 2003
      75 grams over 4 1/2 hours every week, I used to get 75grams every Saturday and another 75 grams on Sunday and have 2 weeks in between.

      I am not huge, I weigh 158 pounds and am 5’6″

      [B]My Current Issue[/B]My neurologist (prominant Neuromuscular in Boston) saw me last in the Summer of 2010 and said I had weaknes in my left leg, new. but otherwise ok, following the same trend, chronically getting a little worse.

      Since I had fallen and hit my head and because I was having balance issues he ordered and MRI: +/- gado

      I had the MRI without enhancement (due to a scheduling error I did not have the second one with the enhancement)

      The results read:
      Several scattered focus of punctate nonspecific subcortical FLAIR signal abnormality may represent gliosis from prior infectious of inflammatory etiology, demylenating disease or early degenerative ischemic changes.”[/SIZE][/SIZE][/COLOR][/B]

      [COLOR=”darkred”]My neurologist did not see the scan but said that the MRI findings are nothing to be concerned with. He said it was likely a migraine or anything. He said it would be too small to represent MS[/COLOR]. He said that I didn’t need another braid MR but if I was worried he’d repeat it in 6 months to a year. My only other mention is a braid MRI done in 1994 that showed “one UBO” translated “unknown bright object” (who names these things, so complicated a machine and we get UBO??)

      I thought there was no CNS involvement in CIDP? Is there anyone there that has had similar findings? Is a physician interested in commenting? He said it wouldn’t be important to repeat the MRI + gado, but my understanding from the work I did with MS patients is that you can only tell if it is active demylenation with enhancement.

      Lastly, I discussed my weakness with him and he gave me a quick check and was suprised at how much I’ve declined in 9 months. Recently, in the past 4 months, I’ve been getting much weaker in all over. I couldn’t hold the remote up long enough for the station to change. I will walk the length of my house and my legs start to burn and I just sit down, wherever I am. And sometimes, like today, I am close to normal. I’m really good about 20% of the time, unfortunately. the other 80% I have to struggle to do simple tasks. I smootch my service dog, Murphy, every day.

      So he set me up with some hip MRIs and and EMG, my 17th one. My MD said that I’ve contributed greatly to the science. I say Ha!

      Thank you for listening in your head to the words you are reading. (that line is always fun.) And thank you to anyone that has information. My EMG is April 26th and then I have a full exam afterwards.

      Again, I apologize for the length. I’ve been reading your threads for a few years now and they’ve helped. I’ve never written one. I am scared for the first time since I was given the diagnosis, when I was 26. I know too much and ABSOLUTELY not enough. Sorry for the ramble. I’m not sleeping well lately and I’m up late another night.

    • Anonymous
      April 19, 2011 at 11:03 am

      Sadly, there is no first of all (as in 1st, 2nd 3rd, etc) way to answer you. Also, no short way. Uh, yes there is- skip to the last paragraph.

      At any rate, so sorry to listen to your story with my eyes- did I get it right?

      In one of the articles by Author Richard Lewis, MD he wrote-

      “[I]CIDP with CNS involvement — CIDP is occasionally associated with CNS involvement, including optic nerve disorders, hyperreflexia, Babinski signs, and MRI abnormalities of CNS demyelination. However, it is unclear whether these combined signs represent associated disease entities or coincidental occurrences of unrelated diseases [21].[/I]”

      So, yes, CIDP could have CNS (Central Nervous System) involvement.

      The NIH says, “[I]A physician may diagnose MS in some patients soon after the onset of the illness. In others, however, doctors may not be able to readily identify the cause of the symptoms, leading to years of uncertainty and multiple diagnoses punctuated by baffling symptoms that mysteriously wax and wane.[/I]”

      An NIH PUBMED article out of Purdue University in2008 reported-
      “[I]Conventional MRI has made most contributions to the diagnosis of MS. However, it is not sufficiently sensitive and specific to reveal the extent and severity of the damage in the disease.[/I]”

      the link: [url][/url]

      There is a comprehensive explanation of MS with a good discussion on the immune system at:


      “[I]There is no single test that unequivocally detects MS. When faced with a patient whose symptoms, neurological exam results, and medical history suggest MS, physicians use a variety of tools to rule out other possible disorders and perform a series of laboratory tests which, if positive, confirm the diagnosis.

      Imaging technologies such as MRI can help locate central nervous system lesions resulting from myelin loss. MRI is painless, noninvasive, and does not expose the body to radiation. [COLOR=”Red”]It is often used in conjunction with the contrast agent gadolinium, which helps distinguish new plaques from old.[/COLOR] However, since these lesions can also occur in several other neurological disorders, they are not absolute evidence of MS. [/I]”

      Therefore, it would appear the enhanced MRI is of little value.

      Your post talks about physicians, plural and multiple emg/ncv tests. Were they also by different doctors, or the same ones?

      No, matter. I would, and did, apply to NWU Chicago Stem Cell Transplant Program. They have reported good results treating unresponsive CIDP as well as MS. Seems to me, it is over 100 MS patients.

      Take thee to Chicago.

    • Anonymous
      April 19, 2011 at 11:33 am

      I have CNS involvement, and possible optic nerve involvement (depending on which doctor I listen to). I don’t have MS. So it does happen.

      Sorry you are currently getting worse, take good care of yourself.