December 6, 2011 at 1:07 am #10060
Hello everyone, I just want to thank yall all for being incredibly helpful to me as I go through this diagnostic limbo phase! I came across something interesting tonight- the Lewis Sumner varient of CIDP.. I can’t seem to find much info online about it.. but what I did find sounds intriguing. Anyone on here have this or know something about it? I have cranial nerve/tongue involvement, and sometimes when i’m tired slight double vision. I found some information that cranial nerve involvement happens in 20% of pt’s along with normal csf (no elevated protein, my csf came back normal).
Anyhow, I was just curious what all yall knew about this varient.. I have my appointment with the unverisity clinic in 1 day.. and i’m super nervous! Just trying to calm my nerves by learning more! Thanks!December 6, 2011 at 9:17 am #102574
The “Lewis” of Lewis Sumner works out of Wayne State here in Michigan. A few of our members have gone to see him.
I don’t know too much about this variant. When you get a diagnosis & if it’s Lewis Sumner it might be worth the travel to come see him…not sure where you are located though.
KellyDecember 6, 2011 at 11:22 am #102575
Bny my husband has MADSAM which is Lewis Sumner. He has primarily motor symptoms –next to no sensory symptoms, and he had a mildly elevated protein in LP. He does slur a bit with speech on occasion (not sure if it is the CIDP as he has lots of reflux with excess saliva which can cause the slurring).
LaurelDecember 6, 2011 at 11:32 am #102576
Thank yall so very much! I appreciate it!
Kelly- that is good to know, in case that’s what it comes down to- I’m in Texas, so Michigan is a ways off, but I’ll gladly go anywhere if it means I can get help! Hopefully we’ll get an answer, and a good one in the next few weeks!
Laurel- thank you! I realized after I found a few articles on Lewis-sumner that it was MADSAM, and that’s what your husband has! I was especially interested in the fact that it has a higher incidence of cranial nerve involvement, and I was reading up to date, and it said that many MADSAM pt’s have normal csf protein and the diminished reflexes aren’t as common or can be “patchy”, only my patellar reflexes are normal- others are considered 1/4, so all those things give me hope.. I think the next emg will be where our answers lie.. I’m NERVOUS for that! Looks like the dr i’m seeing has published a few articles about multifocal polyneuropathies that dont’ have elevated protein in csf, nor emg changes/conduction blocks etc.. so that makes me feel like I will hopefully be in good hands!
I’ll let yall know how it goes! thanks again so much for all of yalls help, Yall have been so incredibly helpful and thoughtful, and I can’t tell you how much I appreciate it while going through all of this!December 7, 2011 at 3:52 pm #102593
I was re-diagnosed with Lewis Sumner Variant in 2006, about 18 months after initial diagnosis of CIDP. My CSF has tested slightly above normal twice, but with oligoclonal bands which are a general hallmark of immunological issues in the nervous system.
Lewis Sumner is very asymetrical in terms of how weakness distributes about the body. My right leg is considerably more disabled than left, and left arm and hand worse than right, and I have continuous double vision from cranial nerve damage. When I have flares in disease activity, I will also get facial numbness. I drive with hand controls and must wear prism lenses in order to correct the double vision enough to drive. My symptoms are about 75% motor 25% sensory. I would label the progression as slow and chronic, with the exception of one very acute and severe exacerbation in late 2005 that persisted for several months and left me with significant disability. During this period, the cranial nerve damage was so severe that my double vision measured 45 dioptres in both eyes – almost might as well have been blind – it truly was the worst. Thankfully this eased over about a 12 month period to a more manageable level of double vision.
The best treatment for me has been IVIG, I have also done extensive plasma exchange and was on immunusuppresive drugs (cellcept) for a while. Solumedrol (IV steroid) was a disaster, and is believed to have triggered the exacerbation I had in 2005. Mayo Clinic doctor told me steroids are counter indicated for Lewis Sumner, but no one understands why they cause symptoms to worsen.
I had initiated contact with Northwestern University regarding a stem cell transplant, but am in a personal “holding pattern” on that one.
Best of luck to you.December 7, 2011 at 10:52 pm #102598
Bilt- wow… thanks for replying.. Sounds like you have been through a lot!! Where were you diagnosed with the lewis sumner varient? From what I researched (dr google and all) it looks like it can have normal protein in the csf and “patchy” emg findings.. this whole process originally hit my right leg, then a week or so later both hands at the same time (for some reason my left leg isn’t really affected) my right hand is a little worse than my left (i’m right handed and my atrophy is defintely more obvious on my right hand)
Interesting about the double vision- I have double vision as well, but not constant, only when i’m tired or when I look a certain direction.. seems to only be in my right eye.. Did you have any abnormalities on your MRI’s of your brain or neck? I have mildly slurred speech when im tired as well.. They think something is also affecting my autonomic system (fast heart rate at rest, near fainting when I stand up, GI issues).
That’s also interesting and scarey about the steriods!! They briefly talked about doing some steroids (oral ones) right now while we wait on a few things, but we came to the conclusion that if its something that needs steriods it probably needs high dose IV steroids, so we’ll just hold off for now and possibly do an IVIG trial in a coupld of weeks – ever heard of someone doing IVIG without a firm diagnosis of anything? They worry about insurance coverage- and so do I since it’s not cheap!
Thanks again, hope you get to get into northwestern soon!December 15, 2011 at 9:45 pm #102679
I am 61 years old. Diagnosed with CIDP about 10 years ago. Have been suffering basically as silent as possible. I am an accountant and my ability to work is closing in on me. I have to admit that I have been reading info from this club for years and never posted. Certain long time members have had great smart things to say in this forum. I have benefited from and have appreciated all the great info. I like a lot of us have been thur many neuros, many NC studies, spinal tap, two sets of IVIG in 2002 & 2010 (not much help). I have monoclonal gammopathy (MGUS). I have also been diagnosed with Lewis Summner variant (from a UCLA Nero in 2009). One reason I have not posted before is that I have been able to function pretty well. I am sadden my those in the club who have suffered more than I. I will try to post more substantive info in the future but I just wanted to get started (probably the two glasses of wine). Next week I start an infusion of Rituxan. Will talk soon. ThanksDecember 16, 2011 at 6:47 pm #102685
To answer your questions to my post….
I’m 49 years old, on full medical disability (both private policy and social security disability) since late 2005.
I was first diagnosed with CIDP in 2004 at UCLA. My symptoms had progressed slowly for several years by that time, but I had been “in denial” and also feared a far worse diagnosis.
Then, in early 2006, in the middle of that 8-month long exacerbation, during which time the asymmetry of symptoms became much more pronounced, I was re-classified with Lewis-Sumner variant by both UC Irvine and Mayo Clinic.
The way way you describe your slight double vision sounds very similar to how I would describe mine as it existed in let’s say 2004, before it got really bad. The nerves that control lateral or horizontal movement of your eyeball may be damaged, mildly, on only one side of your face (your right), now. That causes your right eye to become slightly “crooked”, and when you look off to the side, the eye “drags” thus you then lose aligned binocular vision. Plus, when you get tired, that will exacerbate the “dragging” of the eye. If the damage becomes more severe, the eyes become more and more crooked, and the eye movements become more impaired (paralyzed), thus the double vision becomes much more pronounced, all the time. I would stress, early treatment is key.
It is very easy for a neurologist, particularly an optho-neurologist, who has the right equipment, to measure and document diplopeia (double vision caused by damaged/weakened cranial nerves) However, its probably much more difficult when the level of diplopeia is very subtle.
I had a brain MRI early in the process to rule out other causes of double vision, primarily a lesion or tumor. The scan was clear.
dmcheney – Welcome, I don’t post a whole lot either, but do so when I feel I can be of a higher degree of help to someone. My primary neurologist has just retired, so I am considering going back to Dr. Graves at UCLA for annual or semi-annual consults. Currently my oncology/hematologist is writing my IVIG orders, as he has experience with demyelinating disorders.
Best of luck.December 21, 2011 at 10:28 pm #102767
Thanks for the welcome mat. Most of 2009 I saw Dr Shea at UCLA. He is a partner with Dr. Graves. I did not feel particularly good with Dr Shea. I know that they are good but they seem to focus more on teaching interns than treating patients. There is a Dr with Encino Nureo Group in the San Fernando Valley who I have heard is very good. I tried to see him but the staff would not let me because I had already seen another nureo in the group. I’m currently seeing a oncology/hematologist in Valencia Ca. who I think is great. He ordered Rituxan for me and in 2 weeks it was approved. If you need some specific info let me know.
Happy HolidaysSeptember 9, 2019 at 4:17 pm #117137
Is anyone with madsam still on site? I just found this site but I noticed that most of these replies are from 2011
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