Searching for Answers on Health Woes

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bluestarman

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...the wizard of Mayo, that is. I hit the Yello Brick Road (actually US highway 63) to Rochester on Thursday night, for a Friday appointment, which may lead to more. Looking for a second opinion from them on what is causing not only the fascics but all the extras (headaches, joint stuff, tinnitus, etc.). I'll let you all know how it goes! I'm well over the ALS and *S scares, but would simply like to feel better overall.I was on a two year waiting list, and got a cancellation opening just two days ago. Just in time for temps to dive into the negative numbers (fahrenheit).-Dave
 
good luck...I hope you find what you seek at the end of the yellow brick road (not the wicked witch of the west :D) )Take care,Gary
 
I am confused. Really 2 YEARS WAITING LIST?! You are waiting 700 days for exam. For what? Mayo Clinics with those Doctors are not sent from God.
 
My local Neuro can see me most anytime, but when I applied to Mayo, I got a letter which pretty much said (in a nice way), "Since you are not dying from this and because we see much more impaired people who really need immediate help, we'll call you when we have an opening. Let us know if your situation becomes much worse in the meantime."Unfortunately, sometimes it DOES take a long time to get into Mayo. I also have to acknowledge that while whatever I have is trying and difficult, it does not appear to be life-threatening or degenerative. I'm willing to wait for those who have something more serious to get through the processing.Gotta remember to pack my ruby slippers in case I want to get home faster than a 3 hour tour, a 3 hour tour, especially as the weather is forecast to be getting rough here.-Dave
 
Not that this really has anything to do with anything and I don't want to sound negative, because it's not meant to be negative at all...but I live in the Phoenix area and the Mayo Clinic is here as well (in Scottsdale). I've seen several different doctors at the Mayo Clinic through the years and although they seem to be good doctors, I've actually found out less through them than other doctors in the area. So....to anyone that thinks that the Mayo Clinic is the way to go, I wouldn't spend the time or money to do it unless you really think they would put your mind at ease. They don't seen to be any more informed than anyone else about BFS or any other condition than any other doctor. And yes...they can be very difficult to get into! :)
 
I've been in Detroit working a crisis at one of our customers' sites. Had to deal with some bullheaded union guys which made my BFS pale in comparison as far as a source of irritation. I'll report in here shortly. I've got some more diagnostics to occur at Mayo two weeks from now--mostly an EMG and a host of blood tests, so my experience is not done. Had an MRA (MRI of head and neck blood vessels) already. The doctor was very reasonable and listened to my complaints. The worst part was seeing those waiting for tests, that had things that were much more devastating than a round of BFS.-Dave
 
Well, I'm not done with Mayo yet, but wanted to post an update. I've got to go back for a two day test series that deal with some GI things. My EMG/NCV is over (thank God!), and was clean. Dang, the needles in the hand and one in a deep calf muscle that hit the mother lode of pain were the worst. The shocks weren't so bad (I'm an electrical engineer who's gotten quite a few zaps anyway). Then, I got an endoscopy that they gave me extra sedative for that left me really nauseous and wretching for a day or so, and with really low BP. The endo doc thought I was nervous as I talked a bit too much, thus the extra sedative. Next time I'll keep my mouth shut...I know that as far as tests indicate, I'm autoimmune and paraneoplastic-negative. My brain blood vessels (via MRA) looked fine, with one side slightly larger than the other, which I'm told is normal and fine. No stenosis. The Neuro, Dr. Kumar, was courteous, and thinks that I've got complicated BFS, idiopathic tinnitus, IBS, and migraines. The endo doc also added that my bowel stuff is likely from an overresponse from my sympathetic nervous system, which I tend to agree with as I've felt other evidence of this since my Lexapro debacle in 2004.What a machine that Mayo place is. Scheduling is excellent and tight--I felt like I was making flight connections at O'Hare. But the doctors are human. I didn't run into a Dr. House anywhere, nor were the physicians I talked to any more inspired than the ones I have locally. The empathy was not any different either. What was different were the large assortment of really difficult cases that were there around me--folks for whom this was a stop of last resort. I felt almost foolish with my condition, which is more of a nuisance compared to the 20 year-old who suddenly had his left side go dead, or the woman my age with headaches corresponding to bouts of clinical weakness. This puts things in perspective even with the severe psychological impacts of BFS.-Dave
 
Great news on the EMG! Sorry to hear about the other issues, but they're all "beatable" (is that even a word?) Hope the other tests go well!Hang in there.Mark
 
Well, the tests are done and I'm through with my Mayo experience. I'm clean! Even the GI tests were normal. Gawd that EMG hurt like heck in one calf muscle... So, the final diagnosis is BFS, migraines, and IBS-C. The docs had no answer for the other sundry things like joints going painful in sync with BFS flares, or tinnitus. I got a lot of "may be such and such" observations, but those things were all stuff that could not be tested or treated for with current medical knowledge, and also benign. The neuro thinks I've got some occult sinus disease that comes and goes, that I should get a CT for when it flares up (usually also in concert with a round of BFS). There is a possibility that a bad couple of disks in my neck are also perps, which I also strongly suspect, but the neuro said I'd need more objective symptoms before anyone would operate or inject, and the outcomes with those treatments are not so great anyway. I'll wait.I did have a nugget I brought away from my endoscopy--the doctor there said it sounded like my autonomic nervous system was having trouble controlling my GI tract when it was challenged, and a bit of dysfunction there could affect me in multiple ways such as twitching and other hard-to-explain events. Bingo. This doctor made this observation after I had a not-so-good reaction to the anesthesia Fentanyl that laid me up for an afternoon. Unfortunately, mild dysautonomia is something else that cannot be tested for unless you are really symptomatic, which I'm not.So, I'm back to being a normal BFS person "with benefits." Inderal LA is still working pretty good on the headachey portion of what I go through. The anxiety is long gone, but only a BFSer could understand the discomfort that is present when the hamsters start fighting inside your calves.-Dave
 
hi i found that interesting as i have similar complaints,just had ibs added to the list, also get the joint pain on and off and of course years of twitching. mine started not long after i was given zoloft, bu i also had a bad virus so not sure. anyway pleased your all clear for anything major. ya just gotta learn to live around these symptoms and look after yourself aye.cheerssharon
 

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