First Visit with Dr. Engle: Successful

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Krackersones

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I just got home from my first visit with Dr. Engle. Please see my previous posts for this doctors bio. He definitely lived up to my expectations. I really can't imagine having gone to someone who knows more about what I could possibly have wrong with me or with more of a will to find it.I didn't ask all the questions I planned because he seemed to have a very detailed plan of action and asking too many questions was not appropriate at this stage. I did ask some but he said I was getting ahead of myself at one point and so I backed off and will save my questions for later.He began with a thorough questioning about all my symptoms. I tried to mention everything I thought conceivably relevant, including the existance of some nodules I have in my lower back that several doctors have dismissed over the last couple of years. He felt them and said I should have them biopsied if I get any closer to the surface. I will definitely be following up on this since he didn't say they were nothing. The clinical exam was much more thorough and more expertly done than the others I've had before. He noticed that the nerves on my feet were enlarged (no one ever even looked at them before). He took photos of them. He said irritated nerves can cause an increase in the connective tissue around the nerve causing them to be enlarged (I think this is what he said). I think he also indicated that, if this is why they were enlarged, then it was a sign that I had something that was going on for a long time (maybe genetic) but recently got worse. He did the standard strength tests. He also tapped on my facial nerve and got my facial muscles to move. My husband who was sitting across from me saw what the doctor saw which I think he said is Chvostek's sign. The other neuros I saw did this test do but did not elicited the sign (probably because they didn't do it right). This sign coupled with the spasm on my left hand made me certain that this guy is taking me very seriously. However, even before he saw the Chvostek's sign, I could tell he believed me. With the hand spasm on my nondominant hand there was no doubt my peripheral nerves were excited and they should not be.He reviewed the EMG report I had from an expert EMGer and neuromuscular specialist. I told him the doctor found nothing abnormal and stated so in his report. I also explained that I showed the EMG doctor my hand spasm after he was done with the EMG and the EMG doctor said his opinion did not change. Dr. Engle responded that the spasm on my hand should have changed his opinion like "black is to white." He said the spasm is a certain indication of abnormal electrical activity. I explained that the EMG doctor did not put a needle in my hand nor did he spend much time trying to look for the areas that were twitching so he could put the needle there. I definitely got the message that if you have twitches you are having abnormal activity and therefore you should not be dismissed as totally normal.Of course, I am wanting him to rule out (or come close to it) ALS. He said after his exam that he is 99.9% sure I don't have ALS but that doesn't mean I don't have something else wrong. He said we need to treat the symptoms and try to find the cause. He said he thinks my very high ANA titre is related. He set me up for a full load of testing. I believe over thirty viles of blood were drawn after my visit. I am having a muscle biopsy and a spinal tap tomorrow as well as another nerve conduction study and EMG. He said a nerve biopsy can cause shooting pains in your leg below the biopsy and he thinks you get more info from the muscle biopsy so the nerve biopsy is not necessary. He mentioned that the following two things might explain my symptoms when I pressed him to speculate: a form of CIDP (chronic immune dysneuronal polyneuropathy) and hypoparathyroidism. I hope its the later because he said the women that had this was basically cured after a benign tumor was removed from the parathyroid gland. He said the thyroid and calcium tests I had did not rule out this condition because the parathyroid is not the thyroid it is located nearby and the calcium test I had was not a calcium ion test which is a different test. He said a bunch of other stuff I didn't follow very well but the bottom line had to do with diagnosis being difficult and easily overlooked because the blood tests can be misleading. The lady with hypoparathyroidism was not discovered to have the benign tumor until exploratory surgery was done. So without the surgery you would not have known the cause of her symptoms. The benign tumor was right on a vein or something causing the hormone problem. He also said he could definetly give me something better than Ativan to help with my symptoms which are making me crazy uncomfortable. He really did not want to tell me what he was going to give me until tomorrow. I'm sure part of the reason is he doesn't want me taking anything before tomorrow's tests. I am glad he understands my symptoms are real and impacting my life and wants to help me with the symptoms even before they find the cause.Oh, I mentioned my tongue symptoms several times and before he said he was 99.9% sure I didn't have ALS. I tried to describe all the buzzing etc and he said it was all the same thing -- my nerves are firing when they should be quiet and we need to find out why. He didn't react as if the tongue was a more concerning sign but rather like it was expected given that my symptoms were bodywide.I will let everyone know what happens tomorrow including what meds he gives me. I better send this off before I'm timed out. Krackersones
 
I wanted to add that I have no perception of weakness and he didn't indicate that he found anything either but I didn't directly ask. I felt as if I was passing all the tests. I walk miles everyday and take many flights of stairs at a fast pace with no problem. I am also a teacher so I write, type, and talk all day long too with no problem. I mention all of this because the other doctors I and others have seen seem to stop at no weakness and then say you must be normal. This doctor did not have that attitude. He seemed to very interested in investigating why I was having these symptoms.
 
Thats wonderful for you becasue it sounds like he is really on your side and wanting to get to the bottom of things. I wish I was closer and could go to him. Your symptoms are so similar to mine. I went to visit my GP again today and he is really leaning toward the Fibromyalgia diagnose. He wants me to try increasing the Trazadone at night to help with sleeping, and wait untill after my EMG with Dr Wilson (my phisyo) on Monday. My Phisyo is supposed to be a neuromuscular expert but when he last saw me he only said he would do the EMG for my peace of mind, and only on my right leg becasue that is where the herniation would be effected. But I am having increased symptoms in my hands and arm (tingling, "weakness" numbness, changing from red to white) Its like you said that the nerves are hyperexcited and are misfiring. Its funny you mention the nodules in your lower back becasue I have them too. So did my mother. Have you ever had any problems with low back pain or treatments for it? I was concerened about arachnoitis for a while becasue it seems like most of my symptoms started a week after an Epidural steroid injection for a herniated disc. I just don't know what to think anymore I am so frusterated scared and confused :( I am glad you are getting closer to a diagnose or at least someone who understands. How did you find Dr Engle?
 
I wondered if you ever had blood work to test your parathyroid hormone. I had this the end of June and it was normal. So have all my other thyroid studies, but I still swear this has something to do with one of those glands.
 
I found Engle on the internet and am fortunate enough to live fifteen minutes away. I have not had my parathyroid tested until today. I found some info on the condition on the internet under ohiohealth hypoparathyroid and it connects with many of my symptoms. Yet none of the other doctors ordered the right test including two neurologists and a rheumatologist. They didn't even order the right test after my ANA antibodies were extremely high and hypoparathyroid can be caused by autoimmune antibodies. I may not have this at the end of the day (although I hope I do) but it is upsetting that the other docs didn't even order the right tests when they are so clearly indicated.Krackersones
 
Jro - Great news! I dream of finding a doctor that will try to find out what the problem is rather than to just write Rx's. He's actually got a plan of action - unlike many whose plan is to get you out of their office faster. I've been doing a lot of reading on the metabolic syndromes and many of them are diagnosed through muscle biopsy and have late onset for the milder versions that include muscle cramping, spasms, neuropathy, etc. And, many of them have treatment, supplements, and diets that help so there is hope for us if this is the cause of our symptoms. I am wondering if I will ever get to a doc that will run these tests...... Good luck with all your testing and keep us posted, OK?
 
I know traveling is expensive these days. But for those who are able, I wanted to note that Dr. Engle's office appears to be set up to maximize the benefit to those coming from far away. When you get a consultation appointment, they send you info on hotels nearby (so clearly they have many patients who don't live nearby) and they also automatically schedule you the next day for all the tests. I guess I will be an example to follow for all of you on how helpful this doctor might be. If your symptoms are only anxiety provoking and not interfering with your life then maybe this doctor's full court press is overboard, but if your symptoms are a problem then so far I recommend this place for at least feeling like your doing all you can. This doctor noticed things and mentioned things that two other neuros did not address so this tells me that muscle twitching is not something the average neuro has mastered in terms of causation and treatment.
 
JRO,What a great, detailed message. Thank you!The neurologist I am seeing believes this is an auto-immune disorder caused by the sodium channel getting out of sync. His experience is if we can get the twitching under control (stop it) and keep it under control for 3-6 months the body will re-program itself and it will go away.At least this is my understanding, being a layman.I am excited to hear about this, and look forward to subsequent posts.-43RichyThe43rd
 
Interesting post.I'm not quite sure what to think here.You said:"This sign coupled with the spasm on my left hand made me certain that this guy is taking me very seriously. However, even before he saw the Chvostek's sign". I can't see any Neuro relationship between Chvostek's sign and concomitant spasm of the left hand. The spasm itself is interesting as a penomenon: was it a cramp or something like that? Moreover, with Ca level disorders I would expect many other symptoms to be present as well.So, I still hope and think that you have BFS. I personally suspect that a BFS sufferer should be expected to have some sort of hyperexcitability of the PNS and that therefore Chvostek's sign may be positive.I'm looking with interest toward to your update.For the time being, I'm delighted that you've been reassured about the worse, something I was already very confident it would have been the case.
 
My post was probably a bit stream of consciousness so my recollections may not have organized in the clearest way. The Chvostek's sign and the spasm on the left hand were not specifically discussed in terms of their relationship to each other. He said the spasm on my hand is evidence of abnormal electrical activity. It is actually a slow contraction. If you search palmaris brevis spasm on this board you will find a link to a picture of it. Another member named Swift_TaySwift20 has this too. At one point the doctor did say something about all my symptoms being part of the same hyperexcitability phenomenon when I would try to describe the different types of sensations of twitching I would get.I had my muscle biopsy, spinal tap, and another nerve conduction and EMG. The EMG neuro said he saw no fasciculations or anything related at all to ALS. He did say he felt my sensory nerves were impaired a little bit. Dr. Engle said this too when he did the clinical. I had my sensory nerves tested by two other neuros before this and they found no problem with my sensory nerves. I don't feel any numbness to my sensibilities but I guess I am having slightly less sensation as you get further down my leg and arms according to the tests. What other Ca disorder symptoms are there? It would be nice if this was the problem since it seems the easiest to fix. However, like you, I think this is unlikely but who knows.Engle gave me a prescription for Klonopin and Quinine (the one form that you can get in the US) yesterday. He thinks the later will really help and said he takes it himself at times. I haven't gotten the prescriptions filled but will let you all know how it goes when I do.My next appointment is on Nov. 5. By then he should have the results of all my tests and maybe an answer or a good guess.Krackersones
 

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