tag:blogger.com,1999:blog-496061552170718669.post3107098442503853098..comments2022-08-17T18:36:47.277-04:00Comments on MY ALS JOURNEY: THE NERVES OF SOME NERVES: Advice Your Doctor Probably Never Told You & Other Pecular ALS MomentsUnknownnoreply@blogger.comBlogger3125tag:blogger.com,1999:blog-496061552170718669.post-49502446555121871762017-05-03T15:52:02.561-04:002017-05-03T15:52:02.561-04:00Larry,
Thanks for responding. I don't believe...Larry,<br />Thanks for responding. I don't believe I have had the EMG test but I have an appointment with my pulmonologist next month and I'll ask him about it. I sometimes get desperate to find out anything that will help me deal with this. Fear of the unknown is not good.<br />JackJacknoreply@blogger.comtag:blogger.com,1999:blog-496061552170718669.post-20110415151657528392017-05-03T13:23:52.087-04:002017-05-03T13:23:52.087-04:00Jack,
Have they given you an EMG test? That is wh...Jack,<br /><br />Have they given you an EMG test? That is what led to my diagnosis after 6 months of various specialists and test. I have been through much of what you have with the C. Diff and all. I believe knowing what is going on in the body is better than not knowing. I can deal with what I have better this way, rather than day to day surprises. I pray you can find out what's going on with yourself and find some relief. Thank you for sharing.<br /><br />Larrynitewrithttps://www.blogger.com/profile/03968271056094267260noreply@blogger.comtag:blogger.com,1999:blog-496061552170718669.post-61586903151557621532017-05-03T00:14:19.471-04:002017-05-03T00:14:19.471-04:00Larry,
I feel I need to write to you even though w...Larry,<br />I feel I need to write to you even though we have never met. I feel a kinship in the fact that I was born and raised in Drexel Hill, lived part of my adult life in Haddonfield and Winslow Townshiip, New Jersey. My grandparents lived in Lansdowne and I spent a good part of my childhood there. I attended college at U of P so I am familiar with University City and most of the Philadelphia area in general. My grandfather used to take us to dinner at a fancy restaurant in Claymont, Delaware and I also had friends in New Castle and Newark and the list goes on. I also comment on Ron Tipton's blog but not so much as I used to, I don't have the energy I used to have.<br />My other feeling of kinship has to do with health. I am 72 so a couple of years younger than you but found myself in a health crisis in early 2016. I won't go into the finer details but started with a bowel blockage that the hospital said I could cure at home with a huge amount of Miralax which would avoid surgery if it worked. It worked only too well and by the time I was "cleaned out" I was dehydrated and of course my electrolytes were out of whack. This lead to incontinence (urinary) and loss of muscle tone. Then I managed to catch some "bug" that went right to my chest. I ended up in the hospital only because I had a friend who wouldn't take no for an answer. When I entered the hospital my white cell count was 35,000, well above normal and I was also sepsis. I literally had hours to live. Sixteen days later with many many tests and Cdeff from the antibiotics I was released from the hospital, living on oxygen and not much else. It has just been over a year since I was released from the hospital, still no concrete diagnosis, just know it isn't an auto-immune problem or cancer. My lungs operate at 57% capacity and my immune system is so fragile I can catch an infection just about anytime for no reason. The doctor is hesitant in prescribing antibiotics because of the Cdeff. I have been taking steroids for too long so I also have the unpleasant side effects of that. I am actually very slowly weaning off the steroids but don't know how things will be like when I am off them for good. I cannot walk long distances and stairs are a challenge and I live in a 2nd floor condo. Because of that I don't get out much.<br />This is longer than I thought it would be but I just want you to know that I feel what you are experiencing. My situation is different than yours in the fact that you are diagnosed and know what to expect. I have no diagnosis and therefore no prognosis. I am not sure which is better. I think that we would rather have our lives back the way they were, especially in our declining years.<br />I hope this book like comment does not exhaust you from reading too much. I just felt a need to contact you and as I said above, share the kinship.<br />Jack <br />Jacknoreply@blogger.com