Guest guest Posted July 1, 2005 Report Share Posted July 1, 2005 Dan, I haven't read ahead to see what others have told you already. I'm shooting in the dark here. Your progression sounds atypical. It is almost too rapid to be PLS, but there are others here who have also experienced a rapid progression. I know they will be contacting you. I pray that your progression will slow. One thing that is helpful is removal of all toxic stress in your life. This is the type of stress that just won't go away. It wears down the immune system and puts you at risk of catching anything going around or allowing something that has been lurking in your body to come out. Are you on any medications? Many of us take baclofen, zanaflex, neurotin, a combination of these, or other meds. Some swear by Low Dose Naltraxone, which I may have misspelled. It is also known as LDN. Perhaps Covington will contact you about that. That's a hint, . As for the things you mentioned that you are taking, some of us have taken, or are taking them, with mixed results. One of the major ones we have used is COQ10. I have found it helps my energy level. Others take it with NADH (I think that is correct. If it isn't, will someone please correct me.) I tried it, but did not notice any effect. I do take several vitamins and minerals and trace elements, but most of them have been part of my routine for years before PLS. (It all began when I was a jogger --- oh, the memories of being able to move like that!) Vitamin B12 2000 mcg sustained release is one of them and has been prescribed by my neurologist, also. I do get it over the counter, though.I also take a B Vitamin complex, 1000 IUs of Vitamin E, 25000 IUs of beta carotene (converts to Vitamin A), Selenium 200 mcg daily, Vitamin C 1000 mg daily, Calcium, Magnesium and Zinc combined - I don't know the amounts of each - Flaxseed Oil 1000 mg daily (This allegedly helps clear clogged arteries and helps blood flow more easily, but it is rich in Omega 3 fatty acids and the CoQ10 needs to be taken with some fats to work well.). I think I may be taking a couple of others, too, but they are not related to the functions of these. I really don't know if they help slow the progression or just make me feel better. Each of them was chosen for a long forgotten specific reason while I was jogging and I have just kept taking them, adding a few as the years passed and I learned about antioxidants. I was already taking most of them already. Back to your progression. Have you been in contact with a neurologist on a frequent basis? What is his/her position about your progression? If they don't really know, give them a copy of our handbook on PLS, which was printed by NORD for us. Gentner has some copies she is more than willing to share. That's a hint, too, . Last, welcome to a great group of people who will give you more information about PLS than you can get from 95% of neurologists. There is a wealth of information here and we are all both pleased and sorry that you had to find us. This is a disease that sucks. Mike Gray Logansport IN hello all >I have recently been diagnosed with PLS.It started a little over a > year ago,with tripping and stumbling.Mainly in my right leg. Its now > progressed to my legs arms,voice and swallowing.Up until a year ago > I had my own construction co. and I would think nothing of working 10 > or 12 hr. days,6 days a week.Now I dread the idea of getting in the > shower it wipes me out.If anybody has any suggestions for boosting > energy levels.I would love too here them.I'm now taking b-12,E,and > creatine and it helped some.I would also like too know if my > progression is typical or is it moveing faster than most. Thanks Dan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 Dan, Remember everything is " usually " or " normally " but there are odd balls like me (I think everyone agrees). In less then 2 years I went from first big symtom to w/c, big problems talking/swollowing, need help dressing, extreme pain, everything is exhausting and so slow (like typing)... My neuros can't believe I don't have ALS but all tests are negative. Just hang in there, ask questions and keep saying, I can do this... dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2005 Report Share Posted July 3, 2005 Dan, Welcome aboard. Sorry, still not up to typing much yet after my fall but definitely go and check out www.lowdosenaltrexone.org (note: not ..com). LDN has been of benefit to a number of PLS/ALS people. It is cheap and has no long term side effects. Only difficulty most people have is finding a doc/neuro to prescribe it for them as it is not what naltrexone itself (which we only take in very small doses) was originally designed for. If you have any questions feel free to ask me - hopefully my ability to type longer emails will increase as the pain subsides. Gray wrote: > .................................... Some swear by Low Dose > Naltraxone, > which I may have misspelled. It is also known as LDN. Perhaps > Covington > will contact you about that. That's a hint, . Quote Link to comment Share on other sites More sharing options...
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