Bar2
Your Replies
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January 26, 2015 at 9:59 pm
Jim I have been reading the forums for a while just didn’t feel I much to add. Your comments are always on the mark and you give good references and links thank you. I don’t have diabetes or really anything else before GBS. When it hit I had the spinal tap then IVIG 5 days. We read about the MFS and not surprised that you suggested it. All the time now and esp when trying to sleep my face feels like it’s crawling tingling weird etc. my nuerologist wants to do a nerve conduction test to determine if there is any change in my limbs.we don’t have the funds. At what point if my symptoms progress should I go to the hospital or that they would recommend PE? When the nuerologist tested me last year she said that I had extensive axonal damage that is permanent. Since then I have only been treated symptomaticly. It has become clear that the battle is 90% above the shoulders! Your definitely right some such as your self are dealing with very difficult residuals. At least we have company.
January 24, 2015 at 5:34 pmWow that did not print post all I was asking. My recovery has been slow and incomplete (arms, legs, bowel, bladder and core)etc. About two months Ago i noticed difficulty swallowing and increasing tingling and numbness in my face. has anyone had to deal with this so long after onset? Also has anyone found a way to turn down the ringing in the ears? Anyhow any suggestions would be appreciated Thank You Bar2
January 13, 2015 at 3:30 pmPeteysGrandma this forum is for the exact purpose that you intended. A pain scale does help those who help or care for us professionally or otherwise. To have a way of relating to the pain that we experience. Pain isa totally personal thing. To show what I mean. When I walked into the ER 18 months ago I felt basically pain free within an hour or so I had my face turned to the wall crying, shaking all over with what I described as a full body charley Horse the only thing that helped hold back screams was trying to avoid upsetting my wife even worse, no relief and even then I kept telling them it was an 8-9!! Since then even with meds & therapy and so on I have not had less than a 3-4. So yes the pain can be a very real thing that many have to deal with day & night! What has helped in addition to the meds is trying to help others to the degree that we can and also as your name on the forum makes me suspect that you have a grandchild or two or more that may possibility help to distract from what is clearly a number of difficult health problems. I apologize for the earlier post as I am still finding my way around. GBS may be different on some levels from cidp but I hope some of this helps. Take care
January 13, 2015 at 2:31 pmBbbbbbb
