Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 My daughter was taking 30 mg of Prostigmin (neostigmin) every 4 hours, and it helped her weakness. When she had her sternotomy (open-heart) the surgeon also took her Thymus gland. The pathology report stated that the tissue had lymphoid hyperplasia and that thymic lymphoid hyperplasia is seen in association with Myasthenia Gravis. While she is here at Mass General (she's been here for over 3 weeks now) we hope to ask the neurologist if there has been any correlations drawn between sero-negative Myasthenia or Myasthenia syndrome and Mito. Since her thymectomy, her weakness has improved, and she is currently not taking the prostigmine. We'll see what happens after her colectomy (either this Friday, or sometime next week) if she needs it again. Other stimulants like albuterol (used for breathing treatments) had to be stopped because they sent her into atrial fibrillation. -Lyn (Bonnie's Mummy) www.caringbridge.org/az/bonniemarie Date: Sat, 04 Feb 2006 22:14:59 -0000 Subject: new here---first question I am new here and have lots of questions but hope to answer most of them by reading. How glad I am to find this forum! Not much available online for adults with mito I am finding. I have double vision about half of the time so sometimes reading is tough but will try. I, like others as I have read so far, was diagnosed with MS first and now it is looking like mitochondrial disease. I haven't had a muscle biopsy yet but am taking the supplements and they seem to be helping. I am wondering if any of you are on any stimulants? Since the MS diagnosis I have been taking adderral and provigil, two stimulants. If I don't take them I will just sleep all day. When I used to read about MS it was very common to be on these meds, but I haven't read any stories of mito people on them. I also take Mestinon for strength and topomax for my headaches. If you have tried or or taking stimulants please tell me what and how they work for you? Sometimes I wonder if they cause me more problems then they are worth and now that I have read about heart problems with mito, I am concerned. However, I don't know what I would do without them. Like I said earlier, I would just sleep all day. Thank you in advance. Marie Codier Early Childhood Music & Movement Specialist Quote Link to comment Share on other sites More sharing options...
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