Thinking Back to March '08 Exam

[MPLS1970]

I was thinking back to my March, '08 exam by a very experienced, older Mayo Clinic Neurologist. This was at the Rochester, MN main clinic. This is a clinic that gets a VERY high number of ALS patients because of its national and world wide reputation.He came in very calm and asked me about my twitching story. He said "when did they start?" I said August of last year. he said "well you dont have ALS if thats what you are afraid of." I said I am afraid and why am I twitching? He said I have exercise related fasiculations or BFS..or both. He said "you would have some severe limitations by now if this was ALS"Later during the interview he asked specifically about the twitching. I explained them, how they were both focal in certain spots and all over my body too. He said "dont worry since thats not ALS" "ALS starts in one spot as weakness and spreads." I questioned again and he nicely said, "trust me, we see a lot of ALS here"He ended by saying I have some significant Anxiety and Depression and referred me to the Mayo psych folks (very nice people) and refused to do any MRI, Bloodwork or EMG...saying it would be a waste of time and money.Finally I begged again for something and he said. "OK, lets do this. Can you wait for 4 months?" I said I guess, and he said "schedule another followup appt for July and lets do another exam Then you will know for sure you don't have ALS. ALS is very debilitating and in 4 months you would have major changes, so even though I do not believe you have it, just come back in 4 months and we will look again...but try not to worry about ALS and get your anxiety under control"guess what? I went back to minneapolis, went to a new Neuro who tested me and told me I didnt have ALS, I begged for the tests, he gave me all the blood work he could think of, an EMG and an MRI...all clean. A different doctor performed the EMG and told me I didnt have ALS before he even did the test. He also asked "when did the twitching start? 9 months ago? you dont have ALS then"Guess what part 2?I never went back to Mayo for my follow up. The old Mayo expert was right. I have not degenerated significantly at all. Sure my twitching is different, some days I do feel weak or fatigued, but like everyone keeps saying on here. ALS is deadly and quick.Guess what part 3?I still worry about ALS BFS is like a rock in your shoe. It might slide away for a while but when it gets in the right spot it can really bug. Will you lose your leg? no. Can you keep walking? yes. I hate the fact that I worry about ALS, I hate what BFS can make me obsess over. But thank GOD I dont have MS, ALS, Mitochondrial Disease, Lymes etc.Guess what part 4?I am SURE that at some point in the future (probably near future and probably more than once) I will be SURE I have ALS again. I will be terrified that I have ALS again. I won't have ALS...AGAIN.lastly - I have been really trying to get my anxiety straight and continue to tell myself that this syndrome is both Mental and Physical. That there is a true physical part of this syndrome that causes the twitching. The nerves and muscles are irritated. No wonder they feel fatigued some times. I also have been reading the Mayo Clinic Study whenever I get really nervous. No people progressed to ALS, many had symptoms other than twitching (very reassuring study). Clearly the mental aspect is an amazing part of this. I believe with all the horrible news lately about the world and US economy, housing fears, dollar woes, foreclosures, the election, war on terror, lead paint in toys from China, global warming...etc, etc, etc that all of our minds are getting extra negative and anxiety riddled thoughts. It is impossible to avoid some anxiety right now, and all that feeds this ridiculous disease and makes it worse and the snowball gets bigger.Ahhhh, I feel better.....for now

 

[NinaC2005]

Thanks for a superb summary! Multiple congrats--and don't feel like the Lone Ranger on your worries. I've been twitching for almost 13 months and got a clean EMG last December and multiple good clinical exams since. Your stone-in-the-shoe analogy is quite appropriate. Even at this point, when I get a new hot spot, like one on/in my right tricep this past week--that "stone" rolls back into a sensitive spot--but now, thanks to this site and all the folks here, only for a very brief time! That hot spot, BTW, is gone and I haven't had to resort to one-armed push-ups!Thanks again for an absolutely refreshing post.Mark

 

[DonJose]

Great post and thanks for taking the time to share it. I am a 14 month twitcher and most days I am feeling better and better. But, I still have "some" twitching. I am resigning myself to the possibility this condition may never resolve. But, I am not weak or getting worse, so for this I am thankful. BFS is annoying, but greatfully, we are all still here to complain about it And to NinaC2005, good to see you posting and glad all is well!LInda

 

[StacyDance]

Excellent post. I had my first EMG 11 years ago by the head of neurology at Mayo Rochester. They were great to deal with. I was lucky enough to have a great aunt who worked there and I stayed two weeks so that they could get everything done in one shot! Clean bill of health and told to go home and get on with my life. He also said "you could leave here and step off the curb and get hit by a bus" but I bet you aren't in here worrying about that, are you?" ...... Fast forward 10 years and my husband's aunt was at Mayo Rochester with her husband as he was doctoring for cancer. She was walking out the doors, stepped off the curb and was hit by a car . She ended up in the hospital with some very serious injuries, but did fully recover! It Kind of puts things in perspective, don't you think?StacyDance

 

[TompeteA]

Great posts, thanks for taking the time to write it, It is if I was reading my own story, it was errie. The rock in the shoe analogy real nails it. I was cleared by the Mayo twice, two emgs etc. but like you said, the mental aspect of this is a big part, I still have days where the dreaded ALS fears resurface, it makes not sense, but it is what it is. There are people on this site currently searching for answers in the medical community for what is happening to them, I have long given up on that, but did aggresively try. I wish them luck, hope they can share some groundbreaking info, until then I am I just am living with it and throw in a couple of days here and there of "is that atrophy in my forearm"? Thanks again for sharing your story.

 

[TompeteA]

One more thing about all the horrible newsGlobal warming- The earth was on the verge of the next Ice age in the 70', rememeber that.Recession-This country has been tettering on recession ever since the day Bush took office, the media has been dreaming of a recession for 8 years, who know maybe they finally got one, we will see.If Obama wins on tuesday, all the problems will still be there, but they will magically disappear from the press. We will all of a sudden be winning the war on terrorism, all the dreaded families meetings around the kitchen table will be full of joy, and lots of extra snacks to munch on. As with Bill Clinton, when Obama takes office, the horrible stories of homeless and hungry Americans will vanish from the front pages of the papers.Keep your chin up, glory days may be right around the corner, at least on paper.

 

[cindyandco]

This was one of the most positive posts I've read on here in a while. Thank you!!!! You are so right about the BFS symptoms waxing and waning. The symptoms are uncomfortable, but the real problem is the fear - once we conquer that, we have it licked. For me it is still a battle, but I am so much better than a year ago. Many of you have been at this for over a year. You'd think we'd be past all this worry, wouldn't you!

 

[LaurentHCH]

I have had my clean EMG 4-5 weeks after the facsics started in the swiss als-clinic.they told me they would have seen changes in it, if it was ***. But as the mayo says after several months it is sure, should I doubt my dx of bfs again????