My Journey Update: Dr. Engle Visit

For those of you who know my story and want to know the latest here it is.I saw Dr. Engle this Thursday. No new tests were done except reflexs and lots of questions were asked and answered. The bottom line is that given my severe abnormal sensory nerve conduction study, reports of body-wide muscle twitching reduced somewhat by Klonopin, clean EMGs, evidence of denervation and reinervation on muscle biopsy, no weakness over 7 months since symptoms started, constant contraction in small muscle of left hand, enlarged nerves on top of feet that he says if he if pulled 100 random people off the street he would expect to find none that had a nerve on their foot as large as mine (when he was looking at the nerve he said "This is not ALS") he can't give me a firm diagnosis. He says my symptoms do not fit classically into any known disorder. I am atypical. My problems may well be related to some immune system abnormalities that I've shown signs of. He thinks I should only treat the symptoms with Klonopin unless I have weakness. If I get weakness, then he would suggest addressing immune system related causes. He took pictures of the nerves in my feet early on and at this visit he took pictures of the small cramp in my hand. He wanted to show the small cramp along with otherwise normal muscle tone. He is going to show my case in a slide show at a presentation he is giving. He mentioned that having been around this field so long he has seen a lot of problems attributed to anxiety that are later shown to be physical in nature. He mentioned that myasthenia gravis (which hits predominately young women) used to always be diagnosed as hysteria until they found the cause and treatment. I asked him many times if he thought I could have ALS and he said no I don't. I asked why and he said you would have other things going on by now. He tested my reflexes and said they are a little brisk but this tells him nothing really because we know my nerves are hyperexcited and my reflexes being a little brisk is just part of this same phenomenon. I asked about the sensory nerve tingling etc. He said its hyperactivity just like in the motor nerves. I asked him if my NCV test proved I had demyelination and he said it is his opinion based on his long career experience. The more I talk to him the more I feel he really is well-read and very, very active in the neuromuscular field. He sees mostly atypical cases now and the observations and descriptions of things in the muscle biopsy are his original discoveries in the field. He is known as the "father of the muscle biopsy." I don't think seeing any other doctors will get me anywhere. He did mention the word benign when talking about my condition but also acknowledges he doesn't know exactly what is going on. There is clearly uncertainty here that I must deal with. I am encouraged that I have a doctor that has seen lots of drugs and treatments tried successfully in atypical cases and is very interested in trying to figure things out without taking unnecessary risks. He said a nerve biopsy might tell me if antibodies were sticking to my nerves but he thought the pain afterwards would not be worth the info to be gained.Krackersones

Well I consider these updates to be "good updates" although answers are somewhat unclear- the whole BFS thing is to. Right now along with anxiety exaggerating things I am running with the vitamin defecencies my doctor found to be playing a role in this thing right now. As I mentioned B vitamins are very vital with the neurological symptoms. When going over my labs with the doctor on the phone the other day I asked why some things on there she was referring to as low that were still in the normal range she briefly said that "labs and doctors have lowered ranges so much these days" because almost everyone has defecencies in their metabolic panel and Magnesium being the most common. I also found on the internet a professor/endcrinologist saying that even though your lab results may be in "normal" range but on the "LOW" end technically there is a defiency. Your range should be in the middle or above but not below. On my Potassium it was below the low which was written as ABNORMAL so where my RBC's but the other results she went over that were low but did not have abnormal written beside them she addressed and said she wants to see them higher. That was B12 and Calcium. She suggest you have your metabolic panel ran atleast every 3 months my your general practicioner or Internal Medicine doctor. Jro thanks for your update hang in there. I have been on Klonapin for years and I find it the most helpful and comforting.Lovely

Hi,I found your post interesting. It is not unlike my own set of circumstances. I myself had an abnormal ncv result. There comes a time when you have done all you can and as you say no point in running off for another opinion elsewhere. There is no doubt the guy you saw is knowledgeable and although you don't have a firm diagnosis, we have to realise that they don't always have the answers.Although these things are a struggle at times, the best you can do is just get on with life, making the most of everyday which we all should be doing. Its over 8 years since my first twitch and subsequent problems but nothing has happened to incapacitate me only fear itself was making me feel like I was walking through mud.I wish you well and time will show you that your going to be okSharon

Thanks for the responses. I agree that trying to focus on the positive and doing what you can to feel better whether that is certain activities, diet changes, or relationship development is the best approach. The one day at a time advice is what I live by now. I hope to get some time under my belt without serious declines. That in itself will go a long way in reassuring me.

I agree with the time issue. In general, people come here freaked and then don't come back after some time, because they are over it, already. However, time needn't be waited upon, nor fretted about. We don't have to let time intrude on our sense of wellness. We can just decide that it is over and get on with things; eventually it's what we do anyway. I'm not saying don't take your time, just that we can also NOT take our time and be well. Basso

JRO, thanks for the update. You speak of an enlarged nerve on your foot. What does that look like? I didn't think nerves were visible per se. Glad you had a basically positive report. The not knowing definitively is anxiety provoking, but then none of us really know what is going on 100%...so on we all trudge.Linda

The enlarged nerve on the foot is something I would never have noticed and three other neuros never even looked for it or noticed it either. When he pointed it out to me and my husband, my husband thought he had it on his foot too because it looks so similar to a ligament or vein. My husband even took off his shoe and showed the doc his foot. The doc said he knows mine is a nerve because he can move it a certain way when I point my toes. The nerve issue for me is just another clue/evidence that something is going on with me and that there is a vast difference between neuromuscular specialists who do nothing but deal with unusual neuromuscular issues and those that are a jack of all trades. The former seems to look at everything possible rather than giving you a once over and if nothing major pops out then dismisses you on your way. Even with all I've gone through I am just like many others on this board in that I don't have a clear answer but I do feel better that if things get worse or change, I've got somewhere to go to quickly start trying something and my case if analyzed thoroughly enough may lead to some understanding of nerves and maybe help someone else. Some of the things he suggests if things do get worse are really based on his own experience with patients that you just can't access anywhere else. I forgot to mention that he said my situation could be monophasic. I think he threw that out there to be optimistic since I'm in the unknown category and he has seen unknown things just come and go.

Thanks for the explanation. I am glad you are not prceeding with a nerve biopsy. One thing I think it is important to keep in mind is this doctor is going to be more aggressive in testing as he is a researcher. Again, thanks for the explanation of the nerve on your foot.Linda