Great Paper On The Neurological Manifestations

[ravenwoodglass]

  tiredofdoctors!!! said:

Okay, here it is, as related to my by my neurologist(s):

Perkinje cells, which are the primary component of the Cerebellum, rely on gliosis for their metabolism. Because of that, they have a protein which is remarkably similar to Gliadin in their RNA. When your body begins the autoimmune process, and continues to include Antigliadin antibodies, they begin to mistake the proteins on the Perkinje cells for Gliadin . . . thereby destroying them. Because they are destroyed somewhat randomly, it causes numerous "short-circuits" in the entire neurological system -- as the cerebellum controls virtually EVERY bodily process.

Additionally, the retina contains a proportionally large amount of Perkinje cells -- which may cause the person with high Antigliadin antibody levels to begin to develop night blindness and/or color blindness.

Having all of these, I believe that this is the truth. Because they thought that I had MS, I, too have endured spinal taps, MRI's which are too numerous to count, multiple EMG's -- although it's funny -- my neuropathy is so bad that I don't feel anything during the tests -- I guess that's an upside to having no feeling in your lower legs(?). I have autonomic dysfunction presently . . . which includes decreased intestinal motility (think: impaction every 7-10 days), no sweating . . . but the fluid stays in my body, so I have ankles the size of calves -- maybe even thighs, some days because my brain doesn't tell my vessels to bring it BACK UP to my lymphatic system, blood pressure that can go from 90/ they can't get a diastolic # --even the MD -- to 165/105 within a course of 15 minutes, without compensation in my heart rate, and what they thought were panic attacks . . . . which we now know is my heart rate skyrocketing for no apparent reason. When this becomes a permanent condition, and I don't have days that things are somewhat "normal" (aka, I actually sweat), then they will call it Autonomic Failure. All of this because the Perkinje cells in my cerebellum were destroyed by gluten -- and the antibodies were undetected for WAY too long . . . .

Such is life, and I go on from here . . . but if I can speak at any functions, write any articles to submit to journals for publication, whatever it takes to get the word out, I will. Without waxing philosophic, I DO believe there is a reason for this happening to me. I am working at finding out what that reason is. One, for sure, is that I am VERY secure in my marriage. My husband could have bolted at any time. I even OFFERED to divorce him so that he wouldn't be the "bad guy" . . . and he said the most loving, kind things that I have ever heard. So, I know that, we're in this -- together -- for the long-haul. There are other things that I must learn, and am pondering that on a daily basis. I don't like this disease -- in fact, I hate it -- but I refuse to let it take the enjoyment out of my life. (Sorry to get philosophical -- I seem to be doing that more & more these days . . . didn't mean to inflict it on you guys)

Hugs to you,

Lynne

Lynne, I can not thank you enough for this post. You have such a savvy neuro and have explained this in a way that I can finally understand. I never understood the swelling I get and because I also have Ehlers Danlos Syndrome the swelling causes joint dislocations many times in my sleep. I am so night blind I have been afraid to drive at night for years but never knew why that was happening and why it came on so suddenly. We could be sisters, our experiences have been very similar in the neuro respect. Many of my neuro symptoms have been relieved to some extent but shadows of them still remain. I, like you, have a very supportive DH and I think that helps a great deal. Thanks again for sharing this, I expect you also had a very long road to diagnosis and at times it seems the road to healing is just as long.