Welcome Back: New Doctor Found

[MeaganGranger]

Hey Everyone!I am back, and lord I had to wait for almost an hour to see my new doctor! But it was definitely worth it because it was just as thorough and understanding as my previous one, who until then, was the only doctor I ever found that didn't think I was crazy/only doctor that I liked. He also asked if one of his med-students could sit in on our appointment which I agreed to.He asked me for my full medical history and all that crazy and gave me the follow my finger exam, and the touch my finger and your nose thing, made me tap my heels on the floor, made me push against his hands, made me hold my arms out close my eyes and shake my head (I never understand that one), stuck out my tongue, then he made me do some other crazy stuff that I think he was just doing to mess with me... lol. Although he didn't check me reflexes this time... surprisingly that really doesn't bother me all that much though.Anyway, he said he still felt my headaches were probably in the migraine family, but said they appeared to be kind of like clusters too in their pattern, with the exception that they are not excruciating... But he said since they were not that bad he didn't want to put me on any un-needed medication (which I agree with), and told me to try either excedrin or something called migralief (both over the counter).This was the first time that any of my doctors were ACTUALLY able to observe at least one or two of my fasciculations and he seemed unconcerned, while he said "Yeah, thats weird" he also said "This isn't anything to worry about". He said he didn't feel these were pathological in nature and that even if they were it would not be some awful disease after 2 years. Hear that Bart? After two years of twitching, your twitching is NOT related to anything serious. Of course he said come back if I develop weakness, but he said "Thats not going to happen". He said to please stop worrying about it, but he understands, and we made a standard follow-up in 12 weeks to check on the headaches and new suggestions. He is also a psychiatrist and seems interested in helping me with any anxiety problems.It was actually kind of interesting to sit there and read my chart as I was waiting to leave. I finally got to see the reports of my MRI and my EMG first hand. That was actually quite comforting... despite my MRI finding, which is completely benign and not a problem, my EMG was pristine (November 2008), literally not a single abnormality... that is quite reassuring. I also saw my old neuros notes saying there is absolutely nothing to suggest MND, polyneuropathy, or anything else. She said "It is my belief that this is most likely benign fasiculations".For those of you curious vaccine people I also asked about the new Swine Flu vaccine and he said he would "Give me his speech". He said that all neurologists are going to tell you they have a problem with vaccines because of GBS, but he also said, "You know you can get GBS from ANYTHING post viral", so we probably shouldn't worry about that as much as we do. He also said that the people dying from the swine flu, not that many more than the normal flu, are pregnant women, YOUNG children, and people with diagnosed (remember I said diagnosed, just because you think you may have something they just haven't found yet does NOT count) conditions like cerebral palsy and other serious neurologic diseases. He said the vaccine while still in testing will probably still be remarkably safe, but that if you are not in one of the above demographics you probably don't need it, and you'll probably be fine. The young med student said a bunch of her friends got it last spring and it wasn't any different than the normal flu... so that is his two cents on that. He told me it wouldn't hurt me, but that I probably didn't need it, so don't get it ) Okay, SO.... LONGEST POST EVAAAAAAAAAR!!! Sorry guys, but I wanted to be thorough for anyone who was super interested. So, I hope that helps some people/sheds some light on something.Hugs,Megan

 

[MarioMasher]

Well done. Nice post.And I agree about the swine flu part. Most experts say it is no different than the regular flu. If you get it, it sucks, but sometimes that just happens. All the stuff about "worst case scenario" is only if it mutates, and so far there have been no indications that it is actully going to.

 

[priorityhigh5]

*grabs Megan & dances around the forum*I'm super glad that you had such an awesome expierence with the new Neuro!!~*~Amy~*~

 

[twinTwosome]

Thank you for posting Megan. These vicarious reassurances are the best!

 

[MeaganGranger]

Thanks for all the good thoughts ladies and gents! I know I am still struggling with the anxiety every now and then, but I definitely DEFINITELY feel a lot better than I did back in May, 6 months after dx, and 18 months after the onset of twitching. Its a slow road, but this appointment was definitely a little extra fuel to get me where I eventually want to be. So things are looking up right now!

 

[Chosenone2]

Thanks Megan. We need to trust our Mds a bit more. My GP told me rt off the bat when he saw my calves that it is nothing and you need to understand MND and how it works, Its a dieseas that is of WEAKNESS and not twitching and that the progression is very fast days and weeks , not months like alot of us have been doing. he is one that thinks it is stress and anxiety related.dave

 

[Krackersones]

Megan,Your new neuro sounds very caring and patient, which are the two most important qualities in my book. I'm glad you found him. I'm curious where he was able to see your fasciculations. When he said it was "weird," did he offer or did you press for a possible explanation for why it was happening? I've read many of your posts and we seem to have very similar symptoms except I have a restless nerve type discomfort that goes along with mine, requiring medication. This aspect has made me more aggressive with the neuros because I needed some intervention not just to be told that they saw no evidence of bad stuff on EMGs. The neuros I've seen agree with yours about weakness being critical to the diagnosis of the known bad disease and so without it you should not worry. If I just had the twitching and not the discomfort, I would probably not press for more answers so if you didn't or don't I'm not criticizing you at all. I just cannot help but wonder why neurologists (including the first three I saw) are not more interested in why someone suddenly starts twitching everywhere constantly. Just to say it is weird without saying much else seems strange to me for someone in the field that addresses that aspect of the body. Even if a doctor tells me all the possible theories and says it is hard to know which one it is, I find that more satisfying than saying nothing. Also, is your anxiety related mainly to your twitching and wanting to know why it is happening? If so, I'm curious to know how he would help you with this? It seems totally normal for someone to be anxious if their body is doing something "weird" and no one knows why. Of course, this type of anxiety can be overcome but I am just curious how he would approach it as a neurologist. I hope my questions and comments are not annoying. If they are, feel free to ignore them. I hope your visit has given you great reassurance and puts you on a path to feeling better physically and mentally in the future.Krackersones

 

[FantasticFurball]

just as, we all, have known, you do not have this dreaded disease. What you have are twitches and headache. Congratulations and also good that your new neuro does listen and understand you. In a few month you will be completely over the hump.

 

[MeaganGranger]

Jro and othersAccording to my GP its really nothing to worry about as twitching does occur. Its like headache or pain at times. You can go to your GP and tell him about headache. Then they perhaps investigate the case further and make scannings of the brain (if it really IS a bad headache). If they cant find anything worrisome, they tell you that you are fine but have to live with the headache. Then you may try to change your lifestyle in order to make it less painfull. Or pehaps take some drugs to calm the pain down a bit. With twitching it is exactly the same. You go to the docs office and tell him about the twitching. They make some tests in order to rule out nasty things. When its done they give you an answer: you are fine and not ill. The twitching continue but its nothing serious. Menaing that you perhaps are gonna change the lifestyle or take some drugs in order to calm down. The rest is kind of up to you. You can go to 1000 doctors and make a 1000 tests but it wont kill the twitching. Actually it is fuel as your brain is in red alert everytime you see a neuro as you are aware that if he tell you that you have ALS, you are as good as dead. Its like going from one execution-platoon to another and waiting for the salvo that - fortunately - never comes. This state is really powerfull for your brain. And if you continue long enough, it will make you addictive like the surfers who tries the big waves, the paragliders who challenge the big mountains or sailors who like to circumnavigate the globe alone in storms. You live in a big city. Why not join something dangerous instead? Or something adrenaline-kicking? You must have enough possibilities. Go take a pick. While hunting the adrenaline, you could have fun instead of seing doctors all the time. And the twitching? The best cure is to think of something else.