Getting to Know the Mayo Clinic

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Christi888

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Hi everyone-Just wanted to reiterate how much of a help this board (and the kind, caring people here)- have helped me. :) Thank you all so much for this.Anyway--Now that i'm back from Mayo Clinic (I am going back this Autumn -just to "follow up"...I've always felt....seeing a Dr. ..any Dr...esp a neuro--for the first time...is kinda like a 'first date'-! ;) Just eac ;) h person getting to know the other.After that is out of the way--(with Drs....& "that date".... :LOL: ) then...people can really get to know the other.Anyway--I want to tell my Mayo neuro....(as i will when I see my regular neuro here)--of these other....what I "thought"....were strange ...& scary symptoms...that go with...BFS....(and Isaacs)...that others have! I feel like.. " Hey....I'm not alone!" :unsure: OK-- some of the 'other symtoms'...i've experienced & still experience.....with this syndrome...i'd like to share..& I do hope others can respond.....if they have had any of the symtoms...I'll enumerate...(or..maybe you've had them...all or most)--please--let me know...share with others---just to make me (and..others here).... know....these 'things'...DO occur...with BFCS...Isaacs...& the syndrome in general--- OK....here we go------------------------ ;) 1) Fatigue....I feel sooo ..., very tired---so much of the time! (especially...now...with this hot summer!)--2)Sleep problems-... With the fatigue....a strange...almost paradoxical...symptome...I do NOT sleep as well-! :( I get up often...feeling wide awake...like it's 7:30....or 8 AM....only to look at the clock....& it reads......3:15 AM-- :( And...often...I do not feel "sleepy"..& have difficulty getting back to sleep-! (Even with another Valium)--Oft times...I really do not get back to sleep-!3) Momentary feelings of "loss of balance"--! Not "dizzy'...so much...but a feeling i'm about to fall over! Lasts only a 'split second'...but USED to scare me- :eek: -till i had a "dizzy test"...with my ENT Dr...& it was normal....& my MRIs....(brain)--normal-!What the heck is it about this.."syndrome"...can cause ...this?4) Memory problems---more forgetful--sometimes...like a 'brain fog'-!5) Bowel issues---This...I have no idea...of why this would occur...but..I've read....people with BFCS...do have constipation....or hardening of stools! Does anyone here...have this? I'm trying...to eat more fiber..& would 'stool softeners' help-! Again...why the hell....would...this happen... :unsure: :unsure: .(with a neuro-muscular issue..? ) Maybe Dr. Simon....might have an idea! OK....that's it----! Any others..get any...or all of these? And...If you have some of your own...that i have not mentioned....please...share! :rolleyes: ---Thanks again...! And..I repeat....it's just nice to know...we are NOT alone...with these seemingly.."non neuro"...symptoms! Thanks-- :) Christian88
 
Christian,I envy you. You got a clean bill of health from the Mayo clinic in Rochester. The #1 ranked neuro facility in the country. I know I'm the last person on here to talk, especially at this time, but why are you still concerned about your symptoms? What's the point of going back to the Mayo for an expensive follow-up? Once you get to the bottom of BFS v Isaac's then what? I would like to think that after my 1 year anniversary I will completely stop thinking about this, but now that I read your post I think that this thing will consume me until I die from something else.Christian, all of your symptoms # 1 - # 5 are what I had when I had no clue what was wrong with me....when I was spending 8 hours a day on dr. google worrying about the worst. If I were you I would be getting on with my life. Hopefully I will too once my anniversary pops up (fingers crossed)
 
Cool man. Whatever floats your boat. If I were in your shoes I'd rather spend the money on getting my BCFS cramps massaged out by some talented exotic tropical masseuse(sp?) On a beautiful caribbean beach but hey some people would rather get poked with cold sterile EMG needles in a lab. :). Just having some fun at your expense Christian.....hehehehe
 
Christian,I didn't mean to make light of your symptoms. And I hope you didn't take it that way. The only reason I am poking fun is you had all the tests under the sun and got a clean bill of health from Mayo Rochester. Let us know what Mayo tells you.In addition, I also envy your checking account and/or medical insurance provider. :)
 
I'm gonna hold my tongue---! But, can others here see how "out of bounds" this guy is with his posts-? :mad: I'm addressing others. here on this forum--..since I do not want to dignify this guy(asking about my checking acct-& med insurance) with a response-!
 
Geez......relax bro.I can't make a couple of innocent wise cracks jokes? I guess it must be a sore subject for you and I apologize. Lighten up a little. If it was such a sensitive topic I'm surprised you waxed so poetically about every detail of Mayo in the first place and probably the second.....
 
I hate to see misunderstandings between people here. I understand both points of view expressed. I think the problem is that sometimes people attempt to inject some humor as an anticdote to the real pain and suffering behind what we are all experiencing and this sometimes get misinterpreted. I think we should all try to assume the best intentions here but if you are offended I think it is fair to express that too. I know I have offended others inadvertantly before and truly regret it when I do.Krackersones
 
Yes, introducing humour into his forum , in an attempt to 'lighten' people up ( or make them laugh) is difficult. I totally know where Rob is coming from,as I attempt at times to introduce some mirth, probably at my own peril. Lets face it we all have the same issues, so in effect we are also laughing at ourselves. Having said that I do acknowledge that many have serious concerns, and that should be respected and not be made light of. That is why they come here. So I hear what Christian is saying as well. At the end of the day, probably best to keep the 'comedy' out of the conversation. Christian I have a lot of what you are talking about, but not sure if it is all BFS related. I have IBS, I dont sleep well at all ( very rarely do I sleep through the night). Yes I get the lightheaded moments..and yes I do suffer memory 'fog' when concentrating on something is a real issue ie discussing stuff with co workers and having serious mental blanks about things I know lot about...but have a blank. Like forgetting the name of someone you know really well..now that is embarassing!I think this is the combination of age, mental state, physical state, personality..and some of it indirectly or directly BFS related. Sometimes things just 'happen' as the body and mind jumps, bumps, hiccups and burps ( figureratively and litererally) throughout the day and night.cheersRodger
 
2)Sleep problems-... With the fatigue....a strange...almost paradoxical...symptome...I do NOT sleep as well-! I get up often...feeling wide awake...like it's 7:30....or 8 AM....only to look at the clock....& it reads......3:15 AM-- And...often...I do not feel "sleepy"..& have difficulty getting back to sleep-! (Even with another Valium)--Oft times...I really do not get back to sleep-!I tried to convence my wife that frequent, varied ... loving helps decrease my symptoms.You might try this with difficulty sleeping.Though it really didn't work all that well for me... :(
 
43RichyThe43rdEven though the frequent and varied love-making didn't affect your symptoms, you probably shouldn't have told your wife this... We have a young baby who is teh apple of my eye but whose existence makes for very infrequent love-making, so my advice would be if you can find any excuse to convince your wife to engage in conjugal activities more often, you should milk it for everything it's worth!RegardsSimon
 
Well--At least my original post ("those other symptoms"...recall that?)- has been good for something--turning my post into a 'comedy thread---(at least "Aussie sufferer"...did respond to the question)- :)
 
"I did try it, and surprisingly your wife was very accommodating towards me. This sort of surprised me. You might want to have a talk with her..."Hi MarioI am glad you clarified this for me, because I was quite perplexed about the clown make up on my pillow when I went to bed the other night plus the implausibly large shoes left in the bed. I also found a clown nose under the duvet and when I tried it on there was some sort of odd sticky substance on it - I have no idea what this could have been. So it is a relief to know what all this was about. Thanks for putting my mind at rest.RegardsSimon
 
I agree that when something is directed at you it is perceived very differently. I think everyone understand that we need to be extra sensitive but we also have to give others the benefit of the doubt on their intent sometimes too.
 
That was the very first post I ever wrote on this board! I figured I'd join the board with a bang when I joined. Glad you dug it up.Also glad you like the new avatar. Anna K has always been very special to me. I'm sure we can also turn her into a wonderful metaphor for BFS, if we put our heads to it.
 
Christian 88,Every symptom you listed, along with the twitching, are all symptoms of having too much Candida in your system. Don't take my word for it though. Research 'Candida' and 'Leaky Gut Syndrome.' I had pretty much every symptom you described and now I am symptom free. For whatever reason Candida is almost completely ignored by the conventional mainstream medical community. I won't say any more than that for now. PM me if you have any questions. Good luck in your quest for answers.
 
Robbie, I changed my avitar just for you man. That's me toasting to all of you fine people. Speaking of margaritas... That sounds pretty good... Grrr.. Too bad I can't have alcohol on this diet.
 

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