share some incidental findings

    • Anonymous
      November 6, 2009 at 10:03 pm

      I was just wondering if any of my incidental findings are cidp related.

      Minimal kyophosis
      foraminal stenosis
      moderate degenerative disk in L4and5
      anular tear
      syrinx has elongated one vertibre C456
      carpaltunnel syndrome

      I know none of these are causing my symptoms because most of this is new and what I have is relapse remitting

      what are some of your suprises exposed by extensive testing?

    • Anonymous
      November 7, 2009 at 12:18 am

      Carpaltunnel is definetly related to cidp..

    • Anonymous
      November 14, 2009 at 12:44 am

      CIDP is Chronic Inflammatory Demyelinating Polyneuropathy. It is caused by an autoimmune response that attacks the myelin sheath that surrounds the nerve axons. This attack process can be relapse/remitting or a continual progressive form. Most people exhibit relapse/remitting, that is symptoms come and go.

      It does not affect the Central Nervous system. that is a different syndrome, or possibly MS. It cannot therefore be responsible for any impingement in the vertebrae. Maybe you have this, but it is not CIDP related. I also have L4-L5 and c6-c7 surgeries and have damage at several cervical sites, but not CIDP related.

      CIDP is what it is, and is not what it is not. Suggesting otherwise will confuse those who are less informed. I am not being mean, I hope I am only being clear.

      I only wish recovery for those afflicted with this disease

    • Anonymous
      November 14, 2009 at 11:24 am

      yeah but kyphosis is found in people with neuromuscular disorders. I cant even guess why except that the lack of muscle tone maybe causes the hunch backing I dont know.

      anyways so that is why I posted these findings is maybe others have had other secondary effects that look like mine.

      with 7 years of MRIs (4 of them) I watched these things appear.

      2002 syrnx c5,6
      2004 syrnx and mild degen disk, demyliniating cervical lesion
      2009 syrinx c456, moderate degenerative disk, foraminal and central stenosis, anular tear, kyphosis

      I dont know if they are secondary or just incidental I just wondered if others had interesting findings during their MRIs

      btw I believe RR only accounts for 35% and sometimes (not for myself) for others CIDP can be a symptoms in a greater syndrome such as primary sjogrens and SLE. so sometimes CIDP is not just CIDP.

    • Anonymous
      March 6, 2010 at 11:58 pm

      I had an endoscopic discectomy c3-c4, and c4-c5. Also bulging disc at 5-6. My c spine is very arthritic and there is one vertebrae that is clearly on MRI misaligned. While CIDP is another problem all together, I do notice that many with this disease also have had various spinal column problems. One wonders whether there is a relationship — could inflammation of spinal nerves and roots somehow stimulate an autoimmune response leading to CIDP. We know that it is immune-mediated, but no one knows what specifically causes the auto-immune response. Just a thought.

    • Anonymous
      March 7, 2010 at 8:13 am

      I am in the process of going through all of the initial MRI and spinal taps to see. I know I have L4 and L5 issues.

    • March 7, 2010 at 9:44 am

      regarding causing the autoimune response, in our case, I now think it is the stomach, where 80% of the imune system is centered. The test for candida in the gut was positive, the candida causes the leaky gut and over all sick feeling as well as the allergies since everything is escaping through the gut. The allergies stasrt an inflamatory process and continual trigger to activate the imune system constantly rendering an attack. Hence cidp is born. Just myh opinion of our case. The candida clearly waqs born prior to cidp, as antibiotic courses were a necessity several times early on in life, not just ear infections as a child, but other more serious infections. Regarding the back, again just my opinion, because everything is so weak and there is pain as well as most importantly, the brain is just not getting the message to the muscles to work (because of inflamation on the myelin) the muscles become weak. Especially in the trunk area. ?The curve and mis alignment start happening. I think the key is what starts the inflamatory repsonse, if infact that was your catalyst, then you have to fix that main problem before the cidp or inflamatory response can quit. If the trigger was say a flu shot, then…I guess you would just have to get the cidp under control.

      I wonder what the statistics are like to prove or disprove remission in regards to cidp going into remission. Some people spontaneously go into remission after years of ivig? I wonder what the statistics are regarding if people with cidp who have a slow onset (compared to gbs) have long term ongoing issues, such as allergies, leaky gut, exzema, other autoimmune etc. Do you think most people w/gbs had a definate pinpoint incident immediately prior to onset, such as flu shot or camphobact. or maybe salmonella etc. I wonder if gbs people collect other autoimmune diseases like cidp people seem to. Which might indicate that cidp is caused by a permanent trigger that is not removed. In our case, perhaps the leaky gut?

    • Anonymous
      March 8, 2010 at 9:06 am

      [I]I fear — for myself and for all of you — making [U]way[/U] [U]too[/U] [U]much[/U] of other physical problems. [/I]

    • Anonymous
      March 8, 2010 at 9:29 pm

      Soo right.
      Maybe connected, maybe not. We are not raised nor live as lab rats.
      There is a ‘saying’ among others w/immune related diseases: If you have one? expect others. Soo true.
      But as Abbot and Costello did their routine? “WHO’s on FIRST?” etc.
      Only luck can determine that truly. But I am not a lab rat either.
      Tara for me, over the years, more and more ‘things’ have come to light that ‘might’ have contributed to the downhill to CIDP. None are conclusive nor were detected until I actually GOT the CIDP. I’ve definitely got the CIDP and Cancer and two other immune issues, plus two more on the back burner to be determined. Are they related? Maybe to likely. Could they have been prevented…not likely. Can further things be ‘prevented’.. Highly unlikely. It goes with the territory. Once compromised, there are doors open to lots of problems.
      I hate going to see new docs for new issues because I get this face: 😮 covered up quickly mind you, and a ‘hot potato’ approach to me… Tooo much going on for MERE me to address YOU! Thank you bye.
      It’s frustration? Yes, but it’s reality. Also the calibre of the docs you have to work with. A good doc to me? IS A CURIOUS one! No curiousity? No go for me.
      I wish you more luck and a real diagnosis! ONE is out there!

    • Anonymous
      March 8, 2010 at 10:07 pm

      [FONT=”Microsoft Sans Serif”]i’m with dick s here– i think we long so much for understanding why and how this happened to us, that it is easy to grasp at straws. thinking back, i remember when i first got sick– i was looking suspiciously at everything from my shampoo to the insulation in my house… :confused:

      the search for reasons and correlations can undoubtedly be opening a can of proverbial worms;) [/FONT]

    • Anonymous
      March 8, 2010 at 11:04 pm

      I know I drove myself nuts trying to figure out my illness….when the doctors were failing miserably to do it on their own. Once I meet a competent, knowledgeable doc, who only referred me to competent, knowledgeable docs, I stopped worrying about it constantly and was able to finally rely on my doctors.

      The key is finding a good doctor, who understands your illness and will listen to you. Wishing that you find that soon tara.

    • Anonymous
      March 9, 2010 at 10:28 am

      I am like Alice. I have blamed my house. I was even afraid to color my hair to see if that was contributing to my hospitalization every month. I could get healthier if I can just stay out for a few months. After seeing some improvement with IVIG, I am hopeful.

      I had asked Julie and will ask everyone here… would anyone be interested in filling out a survey/pole to see if there are any correlations? I noticed someone had mentioned spina bifida which runs in my family. Someone else said they can’t see in 3-D. Anyway it excited me and I wanted to find out how others would feel about it.

    • Anonymous
      March 9, 2010 at 10:55 am

      [FONT=”Microsoft Sans Serif”]i’d be more than happy to participate…[/FONT]

    • Anonymous
      March 9, 2010 at 11:00 am

      Thanks, Alice!! Depending on interest I will start a thread for everyone to follow and hopefully put there input in as to what types of questions they would be like to have on the survey.