Guess my ALS Neurologist!

Highlights Only
P

priorityhigh5

Well-known member
Guess who my neurologist is???!!! The "North Central Indiana Neurologist for the Mayo Clinic"...specializing in ALS!!!! Run down of my appt:The nurse was totally great...took her forever to stop talking to me & let the Doctor come in. LOLOLThe Neuro came in...looked at my paper with all my questions/symptoms/fears...looked at me & smiled...asked me...did you look anything up on the internet about your symptoms? I about burst into tears...obviously I told him yes & told him how scared & stressed I have been about all of this. He said I know what websites pop up when you type these symptoms into yahoo or google & let me 1st tell you that I am the ALS specialist in North Central Indiana for the Mayo Clinic (which explains all of the Mayo Clinic certificates all over his walls). He then said I see people with ALS every single day and calm down I dont see anything that concerns me, I will tell you in 10 minutes for sure. He then proceeded to do what I'm guessing was the neurological exam. He asked me who the President of the United States currently is, & who the 2 previous Presidents were (which I really had to think about LOLOL!). Then he did some funny things to my feet, hands, eyes with a little wooden stick with some fuzzy stuff at the end of it...made me close my eyes & drew numbers on the palms of my hands & had me tell him what numbers he drew. He looked in my eyes with the light, looked in my mouth made me stick out my tongue & then had me rest it inside my mouth. Apparently, according to him, ALS atrophy is usually noticed 1st in the tongue...kinda interesting. Then I think he tested my strength by making me raise my hands, legs, feet ect & he pushed down on them. Then I had to walk on my toes & then on my heels. He spent ALOT of time, close to 45 mins in the room with me...most of that time he spent reassuring me. He said he sees nothing that concerns him...at all. He made a follow up appt for me for 3 months but he told me if things calm down, I should cancel the appt...if they stay the same, I should come in, if they get worse, I should call him & come in earlier. He was AMAZING! He said "I am your doctor now...if anything scares you, call me". I really really just liked him alot almost instantly. He laughed at me (not at all in a rude way), he laughed with me, and he answered everything I asked him in a way that I understood without having to ask him to clarify. I feel so giddy right now! I wonder if hes married? I might have to seduce him...LOLOLOL I'm j/k of course! Anyways...thought you guys might wanna know. I asked ALOT of the questions that alot of us have...instead of typing them all out if you want to ask me if I asked him something so you can see what his answer was...just let me know. Thank you everyone...for all of the support you have given me these last few days...I feel a huge weight lifted off of my chest! BTW...he said that he isnt going to DX me with BFS on paper because the insurance companies tend to run with that in directions that may cause problems for me...but he does believe with 100% certainty that BFS is what is making my muscles act all crazy like they are hopped up on drugs. (His words not mine)
 
Hi High,Congratulations!!! Very Good news, now its time to forget about this stuff and move on.BTW we are having a hot tub party on the support group and we are kinda short of BFS chicks please join in, if you dont like the party, you simply put your clothes back on and go home!!High its time to get High very High!Blessings,Eduardo
 
That is great news! I'm a little jealous--I think I need a more high profile doctor :D) It might be worth the post (when you are finished giddily jumping around the room, of course) to tell us some of your questions that the doctor answered. I always love hearing what the specialists have to say.Congratulations!!
 
Hey Twin2! The most important question I asked him is..."Why do I twitch?'" He said what is more important is the reasons why I DONT twitch...like I DONT twitch from ALS ect ect. I thought that made alot of sense...he then said that everyone twitches, some more than others, some dont even notice they twitch, and some are more sensative to it than others...its just the way God made us...but EVERYONE twitches! He then went on to explain EXACTLY how a muscle twitches when we dont consciously move them...I cannot even begin to explain this because he totally went in depth & explained to me along with pictures where our nerves/muscles, other stuff I cant remember, are at in our bodies & how the msg from our brain gets to them. It was all quite confusing but I didnt really care because I dont care HOW it happens...I just wanted to know why! LOLOL He said that twitching is not a sign of anything wrong at all...now if you add weakness, changes in the actual muscle itself, or other medically serious type symptoms...then you may need to do further testing. He also said that he could rule out ALS or any other disease like that just by looking at my complaints/symptoms & seeing how I was walking around when he came in the room...but that he was going to do the neuro exam anyways...MAINLY for my piece of mind...but also because he never ever discounts anything...even if he knows different before doing the exam. I thought this was pretty cool also. Sorry I'm probably not making much sense...I'm still in love with this guy! LOLOL When I'm freaking out next week because something new is happening...remind me how awesome this guy was please!! :LOL:
 
Oh...and he also said that the reason it takes 3 months to get into the Mayo clinic...is because if after 3 months you are still walking/talking/living life...they dont even really need tests to be sure you dont have ALS. He said that twitching isnt a 1st symptom of ALS...by the time someone with ALS has twitching (if they even notice it), 3 months from that time they would most likely be unable to live life normally...if they were even still alive. So for those of us who have been twitching more than 3 months...that should help some with reassurance! This Doctor had numerous certificates from the Mayo Clinic (I felt like I had just met a celebrity LOLOL)...somehow I got lucky & my Family Doctor referred me to a really good one! So...when your neurologists say things to you like I have posted...you can rest assured that even an ALS specialist agrees!
 
Hey, that is great, but not surprising, news. I have been witness to many of these celebrations and they are all wonderful. :D) If I may make an observation on this happy day, i would say that you should now move on from the board. You are twenty eight, a couple of kids, a needy husband, no doubt, and they need you. It has been my experience that people of your age can quickly get over this syndrome and actually find that they no longer twitch. However, that means getting away from "us," no matter how much fun you think we are. :p You see, hanging around this place actually makes the symptoms continue; it is uncanny. Even when I come back to post I find that I begin twitching more than when I give the board a miss. Your great news is all you owe the board, and you can move on with confidence that you have done your bit. Oldies, like me, come and go, because our symptoms seem to remain and we have no perceivable life; even with all the orgies. :mad: Please believe me that I am not chasing you away. You may have good and compelling reasons for staying. As I say, I am relating an observation. We would be sorry to see you go, but rejoice that you were moving on to fulfilling your life in a very beautiful way.Basso
 
The neurologist I saw the other day also told me about the tounge showing ALS first. He looked at mine for a long time and told me no signs of ALS. I too am very releived after seeing a neuro the other day. Congrats to you too!!!
 
Congratulations on having such a positive visit and finding a doctor you can really feel confident about. Did the doctor say why someone might experience an increase in twitching all of a sudden? Did he mention any autoimmune causes or theories for the cause of bfs since he seems to believe in it? Did he mention any possible treatments for symptoms that he has given patients with bfs?
 
I think what he is saying does make some sense but his thoughts seem more directed at very mild twitching. To even suggest that a person with a different personality type wouldn't notice or focus on what I've been experiencing is to not recognize the severity of my symptoms. I think there are many people on this board that have very mild symptoms, do you consider yourself one of them? I really wish I was one of those but I'm not. My husband has occasional twitches, and given my issues, he points them out to me every now and again. His twitches last only seconds and happen weekly not hourly and systemically. I could see how even that amount of twitching might worry someone and not provoke a second thought in someone else. What I have and what some others here have is a sudden-onset of a constant and/or systemic-type of muscle activity. His cold virus theory seems plausible in my case if he was referring to a virus that sets off an immune-reaction that creates antibodies that are irritating/attacking/interfering with my nerves. This is sort of what my neuros seem to being saying might have happened to me. My other problem is the weird vibrating/muscle tightness I get in many places including under my arms. This horrible sensation came with all the twitching and made it very hard to carry on with life as usual. Klonopin has substantially reduced this symptom and this keeps me taking it despite all the warnings about addiction. I went off the Klonopin for 3 days and the same symptoms came back. The symptoms were just like I remembered and make me feel completely justified in taking the Klonopin for the relief it gives me. However, having to take meds to feel somewhat normal makes it even more clear that something is wrong. I'm trying not to put undue effort into finding a cause since finding it is unlikely. I also have evidence of nerve damage from a muscle biopsy and sensory nerve damage from a nerve conduction test. These results all followed normal EMGs and normal nerve conduction tests earlier on. I don't say this to worry people who've had clean EMGs. My neuros aren't saying I have ALS and in fact say or come close to saying the opposite when I mention the subject. I just wonder how much suffering on this board is physical and how much in mental. It is really hard to tell from a person's post or even their description of the problem. If you saw me going about my day, you would probably not think what I was describing was that bad because I am good at keeping my composure. I also don't show evidence of any clinical weakness.Sorry my post is a little rambling and without a clear point. I think the bottom line is that if you are told you are fine and that solves your problem, you are good to go. If you still find the need for symptom relief even with the news that it isn't ALS (as in my case unfortunately), then you will probably need to push for more investigation and information on medications or other therapies. It was my need for symptom relief that pushed me to see mutliple doctors and finally have the muscle biopsy and third nerve conduction test which revealed problems the other tests did not. By the way, I have a physical therapy appointment Friday. I'll be interested in their perspective on these types of symptoms. I tried a massage once but my twitching was worse right afterwards. I will still not turn down a massages or a hot tub as these activities do feel great during the process.If you think of any other insights from your neuro like the connection between sensory issues and ALS etc, please share them. I have greatly appreciated your sharing so far and hope you are still feeling the massive relief from having seen an expert that put your fears to rest.Krackersones
 
ACK!! I think I just learned the hard way not to delete PM's from my what...outbox or sent folder? Deleting them apparently makes them so you cant see them?
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top