Went to the cancer doctor today...
Since I have Lems, I got referred to a cancer doctor so he can oversee all my cancer testing. He is sending me for a scan of the soft tissues of my neck, a mammogram and a colonoscopy.
i hope I can survive the colonoscopy, because that was very difficult for me when I was a healthy person. And he wants all this done within the next two weeks......
i hope I can survive the colonoscopy, because that was very difficult for me when I was a healthy person. And he wants all this done within the next two weeks......
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O gosh this all sounds very scary and the suspense must be killing you! Still it\'s better to know than not to isn\'t it. At least that way you can take steps towards getting better. I believe that a percentage of patients have LEMS without any cancer so I am hoping and praying that is you! Before I was properly diagnosed my neuros also thought I might have LEMS because I have so many autonomic issues but I saw a neuromuscular junction expert and she diagnosed me with MG. I will be thinking of you the next 2 weeks and hoping it all goes off smoothly and with good results. Please let us know how you are doing when you get a chance. Sending you a gentle hug! Ange
Linda,
I don\'t know exactly if there are difficulties with the LEMS neuro junction problems and the same medications that cause problems in MG, but since both involve almost the same process and are autoimmune, please alert the people doing the studies to potential problems with dye and anesthesia. Most of us do fine, but it is good for them to know to watch you more closely. Hugs for good luck, b.
Thanks for the hugs!
I am on full alert about the potential problems with anesthesia. I have had several tests with contrast lately and told the person performing the test of the potential for problems, but so far had none. I go in to discuss the colonoscopy on the eighth. I am very uncomfortable at this point because it is not an easy test for someone with full strength. I will be sure to voice my concerns about it.
On a positive note, I had my visit with the neuromuscular specialist yesterday. He put me through the mil and was very thorough.
Some very good things.....
He is going to do whatever needs doing to get me 3,4 Dap.
He gave me a prescription for mestinon timespan so that I don\'t have to wake up every three hours to take regular mestinon.
He is tapering me off the prednisone because he agreed with me that it is not really benefitting me.
He also recommended that when I have plasmapheresis, that I get it every other day for eight to ten days rather than every day. He said this would allow time for the remaining antibodies to begin recirculating and thus be able to clear more of them from my system.
He showed me that my EMG is not typical of a textbook Lems patient, because I do not have the exaggerated electrical reaction that LEMS is noted for, but he also said he had seen two other Lems patients who were the same way.
All in all, I am extremely pleased and he was a great doctor that made me feel comfortable and was very good about explaining everything he did.
I should get a call either Monday or Tuesday about what I need to do to get the Dap.
It sounds like you are in very capable hands! I think finding a knowledgeable specialist that is easy to work with makes everything else smoother. I hope your other tests go as smoothly as this visit.
When I added the ER mesitnon it really made dosing easier for me. I hope you find it true too. Marie
Got home from the hospital yesterday evening. Had a tough time with the colonoscopy, but lucked up on a great gastroenterologist who besides the colonoscopy also did an endoscopic ultrasound so he could look at lymph nodes or any other suspicious things in the chest and abdomen.
Colonoscopy was negative but he did see a precancerous cyst on my pancreas. He is going to check that again in three months. He was very familiar with Lems, and checked for every source of cancer within his realm. He also ordered another antibody test specific to cancer in Lems patients.
An added bonus:
He gave me a thirty day guest pass to a medical information subscription web site that he belongs to. How awesome is that?